Taming the fear of voice: Dilemmas in maintaining a high vaccination rate in the Netherlands.

In the context of international public debates on vaccination the National Institute for Public Health and the Environment (RIVM), the Dutch public health body responsible for the National Immunization Programme (NIP), fears that the high vaccination rate of children in the Netherlands obscures the many doubts and criticisms parents may have about vaccination. The question arises as to how the robustness of this vaccination rate and the resilience of the NIP can be assessed. To answer this question, we explore the vaccination practices and relationships between professionals and parents using qualitative methods. Drawing on Hirschman's concepts of exit, voice and loyalty, we distinguish between two different approaches to vaccination: one which enforces parental loyalty to the vaccination programme, and one which allows for voice. The analysis shows that due to their lack of voice in the main vaccination setting, parents' considerations are unknown and insight into their loyalty is lacking. We argue that the Dutch vaccination programme is caught between the insecurity of enforced parental loyalty to the NIP and the insecurity of enabling parental voice and negotiating space. We conclude that to increase the resilience of the NIP, experimenting with voice and exit is inevitable.

General practitioners' perceptions of their role in cancer follow-up care: a qualitative study in the Netherlands.

BACKGROUND: In the last few decades there has been a considerable increase in the number of cancer survivors. Health policy makers would like to see cancer follow-up care moved from secondary to primary care. METHOD: Between 2008 and 2010, a qualitative study among primary health care professionals was performed to get more insight into the way they care for cancer survivors. Analysed was whether a coordinating role in cancer survivorship care would fit in with the practical logic underlying the way the general practitioners work. RESULTS: In their everyday work, general practitioners are used to provide care in a reactive way. Based on this habitus, they classify their patients into 'not special' and 'special' ones. Since general practitioners label cancer survivors as 'not special,' they expect these patients to take the initiative to ask for help and present their complaints in a clear and complete way. Their habitus as a gatekeeper implies that they are reticent about referring patients to other primary health care professionals. In regard to 'not special' patients, such as cancer survivors, general practitioners appear to build on the patients' own strengths. CONCLUSION: The emphasis on a wait-and-see attitude in contemporary Dutch general practice, as well as the general practitioners' role as a gatekeeper are at odds with the proactive and holistic approach inherent to a coordinating role in cancer follow-up. Therefore, we assume that it will be difficult for general practitioners to shape a pivotal role in this care.

Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts.

Since the 1990s, many countries in Europe and the United States have enacted genetic non-discrimination legislation to prevent people from deferring genetic tests for fear that insurers or employers would discriminate against them based on that information. Although evidence for genetic discrimination exists, little is known about the origins and backgrounds of fears of discrimination and how it affects decisions for uptake of genetic testing. The aim of this article is to gain a better understanding of these fears and its possible impact on the uptake of testing by studying the case of hypertrophic cardiomyopathy (HCM). In a qualitative study, we followed six Dutch extended families involved in genetic testing for HCM for three-and-a-half years. Semi-structured interviews were conducted with 57 members of these families. Based on the narratives of the families, we suggest that fears of discrimination have to be situated in the broader social and life-course context of family and kin. We describe the processes in which families developed meaningful interpretations of genetic discrimination and how these interpretations affected family members' decisions to undergo genetic testing. Our findings show that fears of genetic discrimination do not so much stem from the opportunity of genetic testing but much more from earlier experiences of discrimination of diseased family members. These results help identify the possible limitations of genetic non-discrimination regulations and provide direction to clinicians supporting their clients as they confront issues of genetic testing and genetic discrimination.

Constructing "best interests": genetic testing of children in families with hypertrophic cardiomyopathy.

Professional guidelines on genetic testing of children have recently shifted their focus from protecting the child's autonomous choice to professionals, together with parents, striving to work in the child's "best interest." This notion of "best interest" allows room for therapeutical as well as psychological and social considerations, and gives rise to the question how parents and professionals weigh up the child's best interest in practice. In this qualitative study, we followed six extended families involved in genetic testing for hypertrophic cardiomyopathy in the Netherlands for 3½ years. In total 57 members of these families were interviewed in depth; many of them more than once. Our empirical analysis shows that the best interest of a child is constructed via long-term processes in the broader context of family and kin. In this context, "best interests" are considered and reconsidered. We conclude that a child's best interest should not be framed as the result of an instantaneous agreement between parents and professionals. In dealing with genetic testing of children, parents as well as professionals reflect on and learn from the processes of generating new meanings of "best interest." To enable professionals to deal with the variety in family life, these learning processes should be documented closely.

Making genetics not so important: family work in dealing with familial hypertrophic cardiomyopathy.

The literature shows that genetic testing could stimulate solidarity among family members, but also lead to major conflicts. To prevent negative effects, clinical geneticists and ethicists have stressed the importance of 'good communication' within families. In this qualitative study, we followed six extended families in the southern and eastern Netherlands involved in genetic testing for familial hypertrophic cardiomyopathy for three and a half years. In total 57 members of these families were interviewed in depth, most more than once. Our analysis shows that genetic testing does affect families, but that families perform a lot of 'balancing work' in order to prevent genetic testing from becoming too all-encompassing. There is much more continuity in family life than is often thought. Moreover, as these families demonstrate different styles of family work, establishing a single norm of 'good communication' in clinical genetics might in fact be more harmful for family life than genetic testing itself.