Organizational ethics in urgent transfers of severely disabled people to intensive care units - a qualitative study.

PURPOSE: Urgent transfers of severely impaired patients with chronic neurological disability (PwND) from a neurological physical and rehabilitation medicine (nPRM) to an intensive care unit (ICU) or an emergency room (ER) served as the basis for this study. We hypothesized that human and structural factors interfered with but were not directly related to the acute context. METHODS: We decided to use a qualitative methodology, based on in-depth interviews with 16 ICU/ER physicians. We used mixed bottom-up and top-down methods. We interpreted our data using a thematic approach based on the key principles of grounded theory, which were modified with consideration of the literature. RESULTS: Three main domains emerged. The impact of the clinical setting notably implied the patient's clinical typology between the acute event and the chronic background, but also bed availability. Key elements of the telephone negotiation were confidence and perceived usefulness of the transfer. Finally, the otherness of some categories of patients, transferred with more difficulty, involved those with cognitive impairment. CONCLUSIONS: The existence of healthcare pathways for many years has created an organizational culture between departments of nPRM and ICUs. But urgent transfers also imply organizational ethics, as a balance should be struck between utility and equity. IMPLICATIONS FOR REHABILITATIONStructural and human factors interfere in urgent transfers, involving the settings within health pathways, the key elements of negotiation to get confidence and a perceived utility of transfer, and certain categories of people, especially those with cognitive impairment.Transfers that imply negotiation between practitioners from physical and rehabilitation medicine and intensive care unit departments, lead to a need of organizational ethics, as a balance should be struck between the principles of utility and equity.The development of facilitating tools such as a commitment charter is of paramount importance as it can support ethical decision-making.

Why do French women refuse to have Down's syndrome screening by maternal serum testing? A mixed methods study.

PURPOSE: The study aims to analyse the reasons underpinning women's refusal to undertake Down's syndrome screening (DSS) by maternal serum testing (MST). METHODS: A retrospective, mixed methods sequential approach was used. An online survey on women's experience of prenatal testing followed by in-depth interviews were conducted, with women over 18 years old, who had been pregnant within five years prior to the study. Altogether, 1726 responses were gathered, of which 217 related to women who had refused MST. The study compares the women who refused MST with women who accepted it on sociodemographic characteristics, the evolution and experience of the pregnancy, their knowledge about Down's syndrome (DS). It also utilises survey comments and five in-depth interviews to explore, using Thematic Analysis, the reasons for refusing MST. RESULTS: To refuse MST is cognitively demanding. Indeed, women who refused MST were better educated, knew more about prenatal diagnosis sequences and DS than women who accepted it. This position is also emotionally challenging as women's interactions with practitioners can put them in difficult situations, where they have to defend their point of view. Reasons for refusing MST go beyond religious beliefs, negative attitudes towards abortion and/or medicalisation of pregnancy. Rather, women's position appears to be driven by a holistic conception of care-based monitoring, values of inclusivity and a desire to remain in control of their pregnancy. CONCLUSIONS: It is essential that women feel accepted and supported in their choice to refuse MST. Consequently, it is important for professionals to remain cognisant of the diversity of factors underpinning women's decision, the pressure this position generates and the challenges that come with it.

Prenatal diagnosis: Women's interactions with practitioners when severe abnormalities are discovered at birth.

BACKGROUND: In an increasingly litigious medical environment, this study examined women's experiences of their interactions with practitioners when severe abnormalities are discovered at birth. METHODS: Eight in-depth interviews with women were conducted in France. Data were analysed using Interpretative Phenomenological Analysis. RESULTS: Four superordinate themes were identified: the importance of attunement to women's emotions and needs; the possibility of litigation but no direct accusation; reasons for not resorting to litigation; and reframing and positive transformations. Despite experiencing distress, women were reluctant to make a complaint against practitioners. Several factors may account for this, but practitioners' ability to relate to women with humanity was particularly significant. CONCLUSION: Women understood the limits of technology and of the care practitioners can provide, but greatly valued practitioners' empathic and honest communications. Thus, adopting a transparent and open approach may foster trusting relationships with women/parents. In turn, this may lower the prospect of litigation being brought against practitioners when severe abnormalities are discovered at birth.

Frames of decision-making in prenatal consultations in England and France. Towards a sociological, relational, and processual approach to autonomy.

RATIONALE, AIMS, AND OBJECTIVES: The article looks at how, during consultations, pregnant women identified as presenting an increased risk of giving birth to a child with an impairment, and practitioners in the field of prenatal diagnosis, decide whether or not to accept the risk of a miscarriage and proceed with a diagnostic examination. METHODS: We conducted 63 observations of consultations in France and 22 in England. Participants were women for whom an elevated risk of abnormality had been identified and the practitioners involved in their care. Our analytical approach consisted in suspending the normative concepts of nondirectiveness and autonomy, and in drawing on Goffman's (1974) notion of "frame" to take account of the experiential and structural aspects that the protagonists bring into the (inter)actions. RESULTS: We identified four frames: medico-scientific expertise, medical authority, religious authority, and compassion. Observation of the ways in which the frames intertwine during consultations revealed configurations that facilitate or hinder the fluidity of the interactions and the decision-making process. The medico-scientific expertise frame, imposed by the guidelines, heavily dominated our observations, but frequently caused distress and misunderstanding. Temporary or sustained use of the compassion and/or medical authority frames could help to repair the discussion and create the conditions that enable women/couples to reach a decision. Variations in configuration highlighted the differences between practitioners in the two countries. CONCLUSIONS: Combining frames allows protagonists to exert reflective abilities and to maintain/restore interactions. The frame analysis promotes a vision of autonomy that is sociological, relational, and processual. The frames are anchored in different structural conditions in England and France.

Prenatal Diagnosis in France: Between Regulation of Practices and Professional Autonomy.

Prenatal diagnosis (PND) was introduced in France in the 1970s on the initiative of medical researchers and clinicians. For many years the regulation of practices was self-imposed, decentralised and idiosyncratic. The advent of 'therapeutic modernity' in the 1990s gave rise to an ethical, legal and scientific framework designed to homogenise PND at a national level, with the creation of multidisciplinary centres (CPDPN) and the Agence de la biomédecine. This article first recovers the history of PND in France. It then compares the activities of two CPDPNs, using ethnographic fieldwork and by analysing national quantitative data compiled by the Agence. It argues that the official policy of nationally homogeneous practices is not born out in practice, at the local level. This lack of homogeneity is most apparent in the number of authorisations for pregnancy termination due to foetal malformation, which varies considerably from one centre to another. Rooted in local culture, this variation relates to organisational methods, decision-making processes and variable levels of tolerance towards the risk of disability. Foetal medicine practitioners, thus, maintain a certain amount of autonomy that is collective rather than individual and that is reflected in the particular 'identity' of a given centre.

Barriers to home-based exercise program adherence with chronic low back pain: Patient expectations regarding new technologies.

OBJECTIVE: To assess views of patients with chronic low back pain (cLBP) concerning barriers to home-based exercise program adherence and to record expectations regarding new technologies. DESIGN: Qualitative study based on semi-structured interviews. PARTICIPANTS: A heterogeneous sample of 29 patients who performed a home-based exercise program for cLBP learned during supervised physiotherapy sessions in a tertiary care hospital. INTERVENTIONS: Patients were interviewed at home by the same trained interviewer. Interviews combined a funnel-shaped structure and an itinerary method. RESULTS: Barriers to adherence related to the exercise program (number, effectiveness, complexity and burden of exercises), the healthcare journey (breakdown between supervised sessions and home exercise, lack of follow-up and difficulties in contacting care providers), patient representations (illness and exercise perception, despondency, depression and lack of motivation), and the environment (attitudes of others, difficulties in planning exercise practice). Adherence could be enhanced by increasing the attractiveness of exercise programs, improving patient performance (following a model or providing feedback), and the feeling of being supported by care providers and other patients. Regarding new technologies, relatively younger patients favored visual and dynamic support that provided an enjoyable and challenging environment and feedback on their performance. Relatively older patients favored the possibility of being guided when doing exercises. Whatever the tool proposed, patients expected its use to be learned during a supervised session and performance regularly checked by care providers; they expected adherence to be discussed with care providers. CONCLUSIONS: For patients with cLBP, adherence to home-based exercise programs could be facilitated by increasing the attractiveness of the programs, improving patient performance and favoring a feeling of being supported. New technologies meet these challenges and seem attractive to patients but are not a substitute for the human relationship between patients and care providers.

Prenatal diagnosis: From policy to practice. Two distinct ways of managing prognostic uncertainty and anticipating disability in Brazil and in France.

Prenatal diagnosis (PND) has gradually established itself as part of the pregnancy monitoring process, with a view to reducing the number of births of children exposed to disability by combining the use of biomedical tools with laws that authorise abortion in cases of foetal pathology. This article looks at how laws which vary from one country to another modulate the way in which PND practices are organised on a daily basis, determine the discourse of practitioners and lead them to adopt specific stances during prenatal consultations with couples coping with a foetal anomaly. We present a comparative ethnographic study, which took place between 2009 and 2011 in France and Brazil, in reference units, based on observation of consultations, professional meetings, and interviews with health practitioners. The fact that access to abortion due to foetal pathology is possible in France, and criminalised in Brazil, conditions how doctors analyse the framework of their medical practice and approach the issue of disability with couples during consultations. In France, practitioners would appear to be satisfied with a professional framework that they themselves created. Faced with prognostic uncertainty, the legal obligation to inform encourages them to discuss all of the potential complications of the diagnosed anomalies and leads them to provide probabilistic information about the life of the child to be, supported by evidence-based medicine. In Brazil, in the public service, the lack of access to abortion has created a malaise among practitioners who criticise this impediment to the objective nature of their practice and to the quality of the information that they provide. Some use prognostic uncertainty to direct the thoughts of women and couples towards the dynamics proper to each individual human trajectory within a given family and a specific social environment.

The uses of ultrasonography in relation to foetal malformations in Rio de Janeiro, Brazil.

The world-wide diffusion of prenatal ultrasound has encountered local historical, cultural and political particularities. The purpose of this article is to study the varied uses of this technology in cases of detection of a foetal anomaly, in Rio de Janeiro, in a context of generalized access to ultrasound, restrictive legislation on abortion and major social inequalities. An ethnographic approach was chosen combining from 2009 to 2011, observations of prenatal consultations and interviews with specialist physicians and pregnant women, in both public and private sector institutions. Analysis of the data allowed us to identify three ideal-typical moments in the trajectory of the pregnant women when a foetal malformation was detected. The first moment occurs before the detection of the anomaly, when an initial ultrasound is carried out, essentially in private centres. The standardized actions of pregnancy monitoring are performed in the background while practitioners use the technology to support the local culture of praise to motherhood and the family. The second ideal-typical moment shows how detection of an anomaly leads to fragmentation of the foetus at the public referral centre for foetal malformations. But far from depersonalizing the consultation, the formalism of the diagnostic procedure is considered by some professionals as a political lever to empower women from poor neighbourhoods as they acquire knowledge and comprehension of the situation despite their lack of decisional autonomy. During the third ideal-typical moment, professionals put the data produced by the image into the larger perspective of the logic of care: the focus is no longer on access to knowledge and autonomy, but on the joint collaboration of women and professionals towards solving the problems of everyday life. The combination of these three moments in time illustrates a process whereby the malformed foetus is humanised, dehumanised and re-humanised with respect to the technological tool.

Women's experience of termination of pregnancy for fetal anomaly: effects of socio-political evolutions in France.

OBJECTIVE: To analyse the experiences of women facing a termination of pregnancy for fetal anomaly (TOPFA) in relation to decisional aspects, attitudes towards the fetus' body and the effects of postpartum depression. The method is based on a two-stage questionnaire given to 120 women who underwent a TOPFA between 2005 and 2006 in a Parisian Prenatal Diagnosis Department and compared to a similar study carried out in 1999 in the same department. RESULTS: In 2005, 68/120 women (57%) compared to 32/103 (32%) in 99 (p < 0.001) believed that the decision of pregnancy termination belongs to couples and doctors together. However, in advanced pregnancy or fetal pathology related to mental deficiency, a higher proportion of women believe that the decision should belong to the parents alone. In 2005, 66% of the women (78/118) compared to (42/103) 41% in 1999 (p < 0.001), chose to see their fetus after the termination. Postpartum depression score was positive in one third of the 2005 series and higher in younger women. CONCLUSION: Our study suggests that women differentiate between various decision-making actors depending on the type of pregnancy termination. The differences observed between 1999 and 2005 suggest a strong interaction between women's experiences, legislation and practices.

Social origins, early hardship and obesity: a strong association in women, but not in men?

This study investigates the relation between early life conditions and adult obesity in France, using a rich data set collected through the 2003 nationally representative Life History Survey. No salient factor emerged in men, while in women, after controlling for current socio-demographic characteristics, a relation was found between obesity and the following factors: father's occupation (OR=3.2 for women whose father was a clerical worker, versus those whose father was in a higher-level occupation); experience of economic hardship in childhood (OR=2.0), and; high parity (OR=2.1 for parities of more than 3 versus parity of 1). Neither early family history nor mother's working status surfaced as significant factors. Those findings highlight a definite gender pattern, with a strong association between early disadvantage and obesity in women, but not in men. Potential mechanisms are discussed, particularly the "habitus", the "thrifty phenotype" and the "feast-famine" hypotheses, and possible interactions with childbearing and motherhood. An integration of social and biological perspectives is needed to reach a better understanding of the processes involved, and to achieve progress in primary and secondary prevention.

Demographics of wheelchair users in France: results of national community-based handicaps-incapacités-dépendance surveys.

OBJECTIVE: To highlight the prevalence of manual and/or powered wheelchair use within the general French population living at home or in institutions, to describe the users and to identify factors determining wheelchair use. METHODS: Data were obtained from national community-based Handicaps-Incapacités-Dépendance surveys on disability and dependency carried out on 2 representative samples of the French population in institutions (n = 15,288) and at home (n = 16,945). RESULTS: The prevalence of wheelchair use is 62 per 10,000 people living in France. Forty-three percent of users live in institutions. They frequently show multiple impairments and severe disabilities. They have a mean age of 70 years and 64% are women. After taking confounding factors into account, results show that wheelchair use is not sex-related and decreases slightly with age. On the other hand, wheelchair use is related to widowhood, to the extent of impairments and disabilities, to confinement, to exposure to environmental obstacles and to institutional life. CONCLUSION: Sociodemographic studies on the use of wheelchairs need to pay greater attention to people living in institutions. The prevalence of wheelchair use in France appears to be far lower than in other western countries, and this observation needs to be examined further with intercultural comparisons.

Person-centredness: conceptual and historical perspectives.

PURPOSE: The definition and aims of rehabilitation are both topics of frequent debate. Recently several authors have suggested defining rehabilitation and its goals in terms of 'person-centredness'. However such attempts to define rehabilitation in this way have not occurred without running into their own difficulties and criticisms. Consequently, one may question whether person-centredness is a good candidate to characterize and define rehabilitation. The purpose of this article is to reflect upon the historical background and conceptual underpinnings of this term and their relevance for understanding contemporary person-centred rehabilitation. METHOD: We conducted a conceptual and historical analysis of the notion of person-centredness in relation to rehabilitation. We ask first whether person-centredness has a consistent and fixed definition and meaning? Secondly, where does person-centredness come from, what is its conceptual history and does an historical approach enable us to identify a unique source for person-centredness? RESULTS: In the context of rehabilitation, we have identified four main understandings or interpretations of the term person-centredness, each of which denotes several ideas that can be, in turn, interpreted in quite different ways. Thus the concept of person-centredness in rehabilitation has multiple meanings. The conceptual history indicates that person-centredness has diverse meanings and that it has been used in a variety of contexts somewhat unrelated to disability and rehabilitation. Moreover, there does not seem to be any strict relationship between person-centredness as it is used in the context of rehabilitation and these prior uses and meanings. CONCLUSION: Person-centredness has an ancient pedigree, but its application in the field of rehabilitation raises both practical and theoretical difficulties. It may be that rehabilitation might get a better sense of what it should be and should do by focusing less on the rhetoric of person-centredness and by putting more emphasis on the investigation and operationalization of its key conceptual components.

Meaning and coherence of self and health: an approach based on narratives of life events.

Using contributions from the fields of interactionist sociology and narrative studies and the results of an empirical study, in this article we examine the subject's mediation between life events and state of health. Examining narratives focusing on significant life events from 26 men and women aged between 51 and 73 from the administrative region of Ile de France, we suggest that dimensions of meaning and coherence of self need not be taken as internal dispositions, but rather as the product of sociocognitive work on self-narration. The characterisation of the types of causal relationships that the narrators establish between significant events and other events, situations or periods in their lives, opens up avenues for the development of a methodological tool to replace traditional ways of measuring sense of coherence and meaning/purpose in life using psychometric methods. This alternative perspective based on a conception of the self as narrative might provide a remedy for certain conceptual and methodological difficulties that are found within the field of coping research.

Socioeconomic position in childhood and in adulthood and functional limitations in midlife: Data from a nationally-representative survey of French men and women.

Research shows that lifetime socioeconomic circumstances are associated with adult health. Yet most studies to date have focused on mortality and additional data on morbidity outcomes are needed. Additionally, most research in this area has been conducted in Northern European countries or in the United States, and less is known about the extent of socioeconomic inequalities in health in other industrialized countries with different health and labour market characteristics. In this study, we examined the relationship between the socioeconomic trajectory from childhood to adulthood and functional limitations in midlife in France. We used data from a nationally-representative sample of French men and women conducted in 2002-2003 (the Life History survey). Participants (n = 4798) were 35-64 years of age at the time of the survey. standardized morbidity ratios (SMRs) associated with different lifelong trajectories were estimated using indirect age standardization. Overall, the socioeconomic trajectory from childhood to adulthood was associated with functional limitations in midlife in both men and women. The experience of lifelong socioeconomic disadvantage was associated with SMRs of 1.44, p < 0.0001 in men and 1.21, p = 0.0207 in women. In men, the prevalence of functional limitations was low among those who experienced upward intergenerational mobility and high among those who experienced a downward trajectory during the course of their professional career. Additionally, the prevalence of functional limitations was elevated among men and women who experienced unemployment. These findings indicate that in French men and women, lifetime socioeconomic circumstances are associated with functional limitations in midlife. Understanding the mechanisms that underlie these health disparities will require additional studies of specific health outcomes.

To work or not to work? The occupational trajectories of wheelchair users.

PURPOSE: To throw light upon the dynamic processes which may or may not lead persons with severe motor disability to employment. METHOD: A qualitative approach to the chronology of both the professional and non-professional occupations of wheelchair users between acquisition of the disability and the interview; this approach focuses upon actions and meanings, thus allowing the authors to identify the diverse factors which help build the occupation situation at the time of the study. The narratives of 36 wheelchair users of working age were used. The objective of the analysis was to reconstitute the occupation trajectories of the participants and hence to suggest a typology. This involved pinpointing the various actors, the external and cognitive contexts of their decisions and actions, and their consequences and related feelings. RESULTS: The wide diversity found in the trajectories forced the authors to go beyond any simple notion of 'work versus non-work' and to focus on the quality of the individual's process of occupation appropriation. Indeed, it is possible to successfully appropriate both work and non-work situations, just as, inversely, it is possible for a person to fail to appropriate either type of situation. Analysis of this process allows one to pinpoint different types of trajectory. On the one hand, trajectories within which people appropriate their occupations--gradual, intermittent, through rupture and successive adjustment--and, on the other hand, unstable or endured occupation trajectories. CONCLUSIONS: The findings suggest that with regard to rehabilitation practices, we should be focussing as much on the appropriation process as on return to work.

Biographical work and returning to employment following a spinal cord injury.

The question of returning to work after the onset of severe impairment is inseparable from the biographical work that disabled people need to achieve. Qualitative analysis of interviews I carried out among people who had become paraplegic and among rehabilitation professionals offered the following insights: * During a period extending beyond rehabilitation, interviewees were absorbed by the work of coming to terms with their impairment and delegated the question of occupation to the professionals. At a later date, some of them manage to recast their biographies and gain ownership of their occupations and activities for themselves. An open environment, which offers negotiable opportunities and space for relationships to form, encourages the development of biographical work. Nowadays, the question of exclusion would appear to dominate the domain of rehabilitation. The belief that prolonged inactivity engenders marginalisation has led professionals to develop a doctrine whereby they encourage their patients to plan for their professional activities from a very early stage. Struggling with different time demands (for example, lengthy administrative procedures and reduced rehabilitation time) professionals organise their work around a new time frame which conflicts with their expertise and is difficult to reconcile with the trajectories of disabled people.

Disability and a sense of community belonging. A study among tetraplegic spinal-cord-injured persons in France.

This article presents a study of the identity of persons with motor impairments with regard to the community of disabled persons. The authors used the Tetrafigap survey on the long-term outcome of Tetraplegic Spinal-cord-injured (TSCI) persons, in France, to study the sense of belonging to the community of disabled persons among 1356 TSCI persons in relation to factors of social participation (both sociological and disability-related) and subjective factors (subjective well-being, social perception of disability, perceived disability). The results show that 44% of TSCI persons felt that disabled persons do not constitute a community (the "no-community" group). Of those who recognised the existence of such a community, 34% said they belonged to it (the "in-community" group) and 22% declared they did not (the "out-community" group). People in the "no-community" group tended to be more socially integrated, whilst those in the "in-community" group tended to have greater social and clinical difficulties. The "out-community" group was more diverse, being made up of both autonomous persons and dependent persons suffering from complications. Factors related to the sense of community belonging were identified using bivariate analysis and multiple logistic regression. Subjective well-being appeared to be independent of any sense of community belonging. However, the authors found a gender difference: women in the "in-community" group described themselves as having a poorer level of well-being than women in the other two groups. The results are discussed in terms of two views on the social treatment of disabilities: universalism and assimilation vs. particularism and positive identity and the growth of the disability movement.