When patients' invisible work becomes visible: non-adherence and the routine task of pill-taking.

While the biographical dimensions of chronic illness have been well researched, the concrete dimensions of patients' work have not been as thoroughly investigated as yet. With the growing concern for self-management, such research would be timely. This study aims to better understand patients' invisible work by highlighting the causes of unintentional non-adherence as well as strategies for adherence. For this purpose, it defines medical treatment adherence as the repetition of the pattern of tasks through which a patient succeeds, in a technical sense, in taking the right medication at the right time, in the right amount, for the right duration. Applying a failure modes and effects analysis approach to 48 semi-structured interviews with Dutch patients, it shows the negative impact of schedule changes, pressure, positioning changes, lack of backup pills and lack of verification tools. Symmetrically, it highlights the role of anchoring, sequencing, positioning, cueing, correcting and verifying. This result points to the need for an analytical approach of patients' work and treatment adherence that would build on the role of routines in organisations and in the workplace.

Intentional Nonadherence as a Means to Exert Control.

Medication adherence is a major issue for patients with a chronic illness, who sometimes rationally choose temporary nonadherence. This study aims at better understanding intentional nonadherence and especially why it seems to fluctuate over time. It is based on 48 semi-structured interviews conducted in a hospital in the Netherlands with patients who had been prescribed a medication for a chronic disease for at least 1 year, and who had either type 2 diabetes, hypertension, Parkinson's disease, inflammatory bowel disease, or chronic myeloid leukemia. The analysis uses a simplified version of the failure modes and effects analysis (FMEA) method. Intentional nonadherence appeared to be the result of the respondents' desire (a) to exert control over the treatment and its effects on their body, and (b) to control the hold of the treatment on their daily life. This result provides a rationale for the fluctuation of intentional nonadherence behavior.

["Nudges": relevance, limitations and ethical issues, specifically in health policy]. / « Nudges ¼ : validité, limites et enjeux éthiques, notamment en santé.

The concept of "nudge" has recently spread accross the field of research that addresses the issue of health behaviours change. According to Thaler and Sunstein (2008) a nudge is "any aspect of the choice architecture that alters people's behavior in a predictable way without forbidding any options or significantly changing their economic incentives". Similar concepts, such as persuasive technology or manipulation, have been studied for decades in the fields of design, psychology or communication. The novelty of the concept of "nudge"' lies in its particular political purpose, namely libertarian paternalism. Meanwhile, the analysis of the decision process induced by a nudge shows that it does not simply amount to a change in the environment and that its handling is ethically tricky. The main interest of this concept might actually lie in a better assessment and a better regulation of the public health impact of choice architecture for economic purposes, such as marketing and advertising.

Decision-making after prenatal diagnosis of a syndrome predisposing to intellectual disability: what prospective parents need to know and the importance of non-medical information.

BACKGROUND: Recently researchers have suggested that non-medical information may impact the decision to continue or terminate a pregnancy after a prenatal diagnosis. This study is an investigation of what type of information prospective parents need for this decision-making in the case of a condition predisposing to intellectual disability. METHOD: Semistructured interviews were conducted in France, Belgium, and Germany with 33 parents whose children have a syndrome that predisposes to intellectual disability. RESULTS: The essential information related to three dimensions: (1) the foetus as a future child and an individual person; (2) the couple as future parents; and (3) the social environment of the future child and his or her parents, and especially the ability of the social environment to provide support. CONCLUSIONS: The findings introduce a new perspective on these prospective parents' essential needs, highlighting that these needs are not limited to medical information but encompass non-medical information and institutional patterns.

What, if anything, is specific about having a rare disorder? Patients' judgements on being ill and being rare.

BACKGROUND: Growing efforts are made to improve the situation of persons with rare diseases, but the specific nature of these disorders remains unclear. OBJECTIVES: To establish (1) to what extent people with rare disorders think that their disease's rarity causes particular difficulties, (2) to what extent these difficulties relate to other causes than rarity (i.e. other characteristics of the disease or other components of the illness experience), (3) to what extent the rarity of the disease may relate to components of patients' experience other than those that are traditionally addressed (i.e. personal or daily life aspects). METHODS: Semi-structured interviews with 29 patients and 15 parents of children with one of six rare diseases (cystic fibrosis, fragile X syndrome, Wilson's disease, mastocytosis, locked-in syndrome and a sixth syndrome). The interviews were conducted in France. The analysis draws on French pragmatic sociology and focuses on the participants' judgements of their experience. Findings The participants considered as normal and acceptable a range of situations that are often viewed as specific to rare disorders and unfair. This rather positive evaluation was conditional on some specific moral criteria being met. The participants attributed the cause of their difficulties to the failure of health professionals to meet these criteria. In the participants' experience, disease-related associations play a key role and rarity seems to contribute to making them especially important. CONCLUSIONS: Patients' experience would be considerably improved if health professionals more often fulfilled their moral expectations, especially regarding diagnosis disclosure and information. (250 words).

Who rules rare disease associations? A framework to understand their action.

The inner structure of so-called 'patients' organisations' has been accorded relatively little attention with respect to their increasing role in the medical world. This comparative study in France of eight such organisations, matching six rare disorders, explores the issue of power and decision making through the description of the entities that make up the organisation (and especially which stakeholders are represented), their mutual relationships, the temporal scope of collective action, and the concrete achievements of the organisation. Two main types of organisation are distinguished: 'pluralistic' organisations (that bring together a broad array of different stakeholders who are willing to work together) and 'monistic' organisations (where a single category of stakeholders firmly takes the lead). Their operations are very different and result from the association's composition. A key finding is that both the usual opposition between lay and expert and the reference to the diseases' characteristics prove to be irrelevant to understanding these organisations. Rather, the composition of the leading group is crucial.

How did uncommon disorders become 'rare diseases'? History of a boundary object.

The category of 'rare diseases' has been in growing use in the fields of public health and patient advocacy for the past 15 years in Europe. In this socio-historical inquiry, I argue that this category, which appeared initially as a by-product of the orphan drug issue in the United States of America, is a boundary object. As such, it has different specific local uses: a meaningless category for physicians, it relates to the patients' experience of illness, whereas the pharmaceutical industry first considered it as being synonymous with small markets and then with innovation. Public bodies contributed to framing a common and blurred use, based on a statistical definition whose purpose was to foster co-operation between the four groups involved in the issue. In the definition process of the category of rare diseases, the key actors were the patients and public bodies, not medical professionals or the pharmaceutical industry.

Exploring one's own human condition: adults affected by cystic fibrosis.

Drawing on a sample of 11 interviews in France with adults affected by cystic fibrosis, and applying grounded-theory analysis, I describe illness-related learning processes in the case of persons affected by a genetic disorder with early onset. Three outcomes might be of interest to health professionals. First, the diagnosis of genetic disease does not imply that the patients consider themselves to be ill. The meaning of being affected by a genetic disorder has to be understood. Second, these patients gain a particular knowledge of their illness that helps them undertake or avoid certain actions to achieve goals they consider important, through a process I call "critical internalization." Third, these patients exhibit similarities with Freidson's classical medical practitioner's clinical mind, although health is not at all their main priority.