Frans Vosman

Rethinking critical reflection on care: late modern uncertainty and the implications for care ethics

Care ethics as initiated by Gilligan, Held, Tronto and others (in the nineteen eighties and nineties) has from its onset been critical towards ethical concepts established in modernity, like ‘autonomy’, alternatively proposing to think from within relationships and to pay attention to power. In this article the question is raised whether renewal in this same critical vein is necessary and possible as late modern circumstances require rethinking the care ethical inquiry. Two late modern realities that invite to rethink care ethics are complexity and precariousness. Late modern organizations, like the general hospital, codetermined by various (control-, information-, safety-, accountability-) systems are characterized by complexity and the need for complexity reduction, both permeating care practices. By means of a heuristic use of the concept of precariousness, taken as the installment of uncertainty, it is shown that relations and power in late modern care organizations have changed, precluding the use of a straightforward domination idea of power. In the final section a proposition is made how to rethink the care ethical inquiry in order to take late modern circumstances into account: inquiry should always be related to the concerns of people and practitioners from within care practices.

The MS@Work study: a 3-year prospective observational study on factors involved with work participation in patients with relapsing-remitting Multiple Sclerosis

BackgroundMultiple Sclerosis (MS) is the most common cause of neurological disability in young and middle-aged adults. At this stage in life most people are in the midst of their working career. The majority of MS patients are unable to retain employment within 10xa0years from disease onset. Leading up to unemployment, many may experience a reduction in hours or work responsibilities and increased time missed from work. The MS@Work study examines various factors that may influence work participation in relapsing-remitting MS patients, including disease-related factors, the working environment and personal factors.Methods/designThe MS@Work study is a multicenter, 3-year prospective observational study on work participation in patients with relapsing-remitting MS. We aim to include 350 patients through 15–18 MS outpatient clinics in the Netherlands. Eligible participants are 18xa0years and older, and either currently employed or within three years since their last employment. At baseline and after 1, 2 and 3xa0years, the participants are asked to complete online questionnaires (including questions on work participation, work problems and accommodations, cognitive and physical ability, anxiety, depression, psychosocial stress, quality of life, fatigue, empathy, personality traits and coping strategies) and undergo cognitive and neurological examinations. After six months, patients are requested to only complete online questionnaires. Patient perspectives on maintaining and improving work participation and reasons to stop working are gathered through semi-structured interviews in a sub-group of patients.DiscussionProspective studies with long-term follow-up on work participation in MS are rare, or take into account a limited number of factors. The MS@Work study provides a 3-year follow-up on various factors that may influence work participation in patients with relapsing-remitting MS. We aim to identify factors that relate to job loss and to provide information about preventative measures for physicians, psychologists and other professionals working in the field of occupational health.

Is technology the best medicine? Three practice theoretical perspectives on medication administration technologies in nursing

Even though it is often presumed that the use of technology like medication administration technology is both safer and more effective, the importance of nurses know-how is not to be underestimated. In this article, we accordingly try to argue that nurses labor, including their different forms of knowledge, must play a crucial role in the development, implementation and use of medication administration technology. Using three different theoretical perspectives (heuristic lenses) and integrating this with our own ethnographic research, we will explore how nursing practices change through the use of medication technology. Ultimately, we will argue that ignoring (institutional) complexity and the various types of important knowledge that nurses have, will seriously complicate the implementation of medication administration technology.

A qualitative study assessing patient perspectives in the process of decision-making on disease modifying therapies (DMT’s) in multiple sclerosis (MS)

Background Physicians commonly advise patients to begin disease modifying therapies (DMT’s) shortly after the establishment of a diagnosis of Multiple Sclerosis (MS) to prevent further relapses and disease progression. However, little is known about the meaning for patients going through the process of the diagnosis of MS and of making decisions on DMT’s in early MS. Objective To explore the patient perspective on using DMT’s for MS. Methods: Ten participants with a recent (< 2 years) relapsing-remitting MS diagnosis were interviewed. Seven of them were using DMT’s at the time of the interview. All interviews were transcribed and analyzed using a hermeneutical-phenomenological approach. Results The analysis revealed the following themes: (1) Constant confrontation with the disease, (2) Managing inevitable decline, (3) Hope of delaying the progression of the disease, and, (4) The importance of social support. The themes show that patients associate the recommendation to begin DMT’s (especially injectable DMT’s) with views about their bodies as well as their hopes about the future. Both considering and adhering to treatment are experienced by patients as not only matters of individual and rational deliberation, but also as activities that are lived within a web of relationships with relatives and friends. Conclusion From the patient perspective, the use of DMT’s is not a purely rational and individual experience. More attention to the use of DMT’s as relational and lived phenomena will improve the understanding of the process of decision-making for DMT’s in MS.

Multiple Sclerosis and Work: An Interpretative PhenomenologicalAnalysis of the Perspective of Persons with Early Stage MS

Abstract nObjective:This study explores the lived experience in their working lives of people with early stage multiple sclerosis (MS). nMethod: Ten people at various stages in their careers (applying, employed, recently retired) who had been diagnosed with early stage MS were interviewed in open, in depth interviews. Transcriptions were analysed following a phenomenological approach. nResults: Six themes were found: the tiresome process of adjustment, inventing ways to do your work, feeling hurt about how others see your illness avoiding applying for jobs, embracing retirement, and mourning over lost work. Instead of relating these findings to mainstream theories that presuppose rather than investigate subjectivity (coping, selfmanagement, skills), we generalize these findings by relating them to the psychodynamic model of work of Christophe Dejours. This model is a clinical theory that offers an account of the relations between subjectivity, work, and action. nConclusion: Current models of management and vocational rehabilitation maintain individual/group and body/mind dichotomies that don’t exist in the lived experience of work and rehabilitation of people with MS. It is recommended that professionals offering supervision or vocational services to employees with early stage MS or other chronic conditions relativize these models while offering professional help, and that they revitalize the art of listening as an act of inclusion and acknowledgement.

Tinker, tailor, deliberate. An ethnographic inquiry into the institutionalized practice of bar-coded medication administration technology by nurses

AIMnExplore the practice of nurses working with bar-coded medication administration technology, to gain insight in the impact it has on their work.nnnBACKGROUNDnThe widespread presumption of using Barcoded Medication Administration Technology (BCMA) is that it will effectively reduce the number of errors in the dispensing of medication to patients. However, it remains unclear whether this is the case in actual practice.nnnMETHODnTwo distinct but overlapping research methodologies of Institutional Ethnography and Praxeology were combined as a means to uncover the highly complex practice of BCMA by nurses.nnnRESULTSnThe implementation of BCMA creates a series of problems leading to nurses constantly tinkering with the technology. At the same time they are continuously deliberating the best ways of tailoring the BCMA to each of their patients.nnnCONCLUSIONnAlthough working with BCMA is often misconstrued as being mindless and automatic, conforming to the technology, this tinkering with BCMA in fact always entails thorough deliberation by nurses.

Nurses’ knowledge and deliberations crucial to Barcoded Medication Administration technology in a Dutch hospital: Discovering nurses’ agency inside ruling

This article shows how Barcoded Medication Administration technology institutionally organizes and rules the daily actions of nurses. Although it is widely assumed that Barcoded Medication Administration technology improves quality and safety by reducing the risk of human error, little research has been done on how this technology alters the work of nurses. Drawing on empirical and conceptual strategies of analysis, this qualitative study used certain tools of institutional ethnography to provide a view of how nurses negotiate Barcoded Medication Administration technology. The approach also uses elements from practice theory in order to discern how technology operates as a player on the field instead of being viewed as a ‘mere’ tool. A literature review preceded participant observation, whereby 17 nurses were followed and data on an orthopaedic ward were collected over a period of 9u2009months in 2011 and 2012. Barcoded Medication Administration technology relies on nurses’ knowledge to mediate between the embedded logics of its design and the unpredictable needs of patients. Nurses negotiate their own professional logic of care in the form of moment-to-moment deliberations which subvert the ruling frame of the barcoded system and its objectified model of patient safety. The logic of Barcoded Medication Administration technology differs from the logic of nursing care, as this technology presumes medication distribution to be linear, even though nurses follow another line of actor-bound safety practices that we characterize as ‘deliberations’.

Multiple sclerosis (MS) in the life cycle of the family: An interpretative phenomenological analysis of the perspective of persons with recently diagnosed MS.

INTRODUCTIONnIn this study the authors explored how people with recently diagnosed multiple sclerosis (MS) experience their disease within their family lives. Ten people in various stages of the cycle of family life (leaving home, finding a partner, raising children, parenting adolescents, launching children) who had been diagnosed with MS were interviewed in half-structured conversational interviews.nnnMETHODnTranscriptions were analyzed following a phenomenological approach.nnnRESULTSnFive themes were found: (a) dwindling capacity for housekeeping and childcare (b) struggling to ask for or to accept help, (c) countering awkward attitudes toward my illness, (d) suspecting family members of concealing their, and (e) watching family members wrestle with your illness.nnnDISCUSSIONnThe participants described that their illness affected their ability to care for their family and home as they used to. Only a couple of studies have addressed the first person perspective of patients on family and MS. The study expands on these studies by exploring not previously examined perspectives on leaving home, finding a partner, parenting adolescents, and launching children. The findings on family and MS, approached as elements of the first person perspective of MS patients, may guide future research. Given the pivotal role of worries on family in patient experience of MS, we argue that acknowledgment of family as a constitutive element of the patient perspective should be integrated in regular MS care. The authors suggest that the clinical handling of MS as a family issue needs to be done thoughtfully and with attention to the specifics of each unique family situation. (PsycINFO Database Record