The quality of caring relationships

In health care, relationships between patients or disabled persons and professionals are at least co-constitutive for the quality of care. Many patients complain about the contacts and communication with caregivers and other professionals. From a care-ethical perspective a good patient-professional relationship requires a process of negotiation and shared understanding about mutual normative expectations. Mismatches between these expectations will lead to misunderstandings or conflicts. If caregivers listen to the narratives of identity of patients, and engage in a deliberative dialogue, they will better be able to attune their care to the needs of patients. We will illustrate this with the stories of three women with multiple sclerosis. Their narratives of identity differ from the narratives that caregivers and others use to understand and identify them. Since identities give rise to normative expectations in all three cases there is a conflict between what the women expect of their caregivers and vice-versa. These stories show that the quality of care, defined as doing the right thing, at the right time, in the right way, for the right person, is dependent on the quality of caring relationships

Population-based preconception carrier screening:how potential users from the general population view a test for 50 serious diseases

With the increased international focus on personalized health care and preventive medicine, next-generation sequencing (NGS) has substantially expanded the options for carrier screening of serious, recessively inherited diseases. NGS screening tests not only offer reproductive options not previously available to couples, but they may also ultimately reduce the number of children born with devastating disorders. To date, preconception carrier screening (PCS) has largely targeted single diseases such as cystic fibrosis, but NGS allows the testing of many genes or diseases simultaneously. We have developed an expanded NGS PCS test for couples; simultaneously it covers 50 very serious, early-onset, autosomal recessive diseases that are untreatable. This is the first, noncommercial, population-based, expanded PCS test to be offered prospectively to couples in a health-care setting in Europe. So far, little is known about how potential users view such a PCS test. We therefore performed an online survey in 2014 among 500 people from the target population in the Netherlands. We enquired about their intention to take an expanded PCS test if one was offered, and through which provider they would like to see it offered. One-third of the respondents said they would take such a test were it to be offered. The majority (44%) preferred the test to be offered via their general practitioner (GP) and 58% would be willing to pay for the test, with a median cost of €75. Our next step is to perform an implementation study in which this PCS test will be provided via selected GPs in the Northern Netherlands

Population-based preconception carrier screening: how potential users from the general population view a test for 50 serious diseases

With the increased international focus on personalized health care and preventive medicine, next-generation sequencing (NGS) has substantially expanded the options for carrier screening of serious, recessively inherited diseases. NGS screening tests not only offer reproductive options not previously available to couples, but they may also ultimately reduce the number of children born with devastating disorders. To date, preconception carrier screening (PCS) has largely targeted single diseases such as cystic fibrosis, but NGS allows the testing of many genes or diseases simultaneously. We have developed an expanded NGS PCS test for couples; simultaneously it covers 50 very serious, early-onset, autosomal recessive diseases that are untreatable. This is the first, noncommercial, population-based, expanded PCS test to be offered prospectively to couples in a health-care setting in Europe. So far, little is known about how potential users view such a PCS test. We therefore performed an online survey in 2014 among 500 people from the target population in the Netherlands. We enquired about their intention to take an expanded PCS test if one was offered, and through which provider they would like to see it offered. One-third of the respondents said they would take such a test were it to be offered. The majority (44%) preferred the test to be offered via their general practitioner (GP) and 58% would be willing to pay for the test, with a median cost of [euro ]75. Our next step is to perform an implementation study in which this PCS test will be provided via selected GPs in the Northern Netherlands

Making sense of risk. Donor risk communication in families considering living liverdonation to a child

This paper contributes to the growing line of thought in bioethics that respect for autonomy should not be equated to the facilitation of individualistic self determination through standard requirements of informed consent in all healthcare contexts. The paper describes how in the context of donation for living related liver transplantation (LRLT) meaningful, responsible decision making is often embedded within family processes and its negotiation. We suggest that good donor risk communication in families promote “conscientious autonomy” and “reflective trust”. From this, the paper offers the suggestion that transplant teams and other relevant professionals have to broaden their role and responsibility for risk communication beyond proper disclosure by addressing the impact of varied psychosocial conditions on risk interpretation and assessment for potential donors and family stakeholders. In conclusion, we suggest further research questions on how professional responsibility and role-taking in risk communication should be morally understood

The role of peer meetings for professional development in health science education: a qualitative analysis of reflective essays

Introduction The development of professional behaviour is an important objective for students in Health Sciences, with reflective skills being a basic condition for this development. Literature describes a variety of methods giving students opportunities and encouragement for reflection. Although the literature states that learning and working together in peer meetings fosters reflection, these findings are based on experienced professionals. We do not know whether participation in peer meetings also makes a positive contribution to the learning experiences of undergraduate students in terms of reflection. Aim The aim of this study is to gain an understanding of the role of peer meetings in students’ learning experiences regarding reflection. Method A phenomenographic qualitative study was undertaken. Students’ learning experiences in peer meetings were analyzed by investigating the learning reports in students’ portfolios. Data were coded using open coding. Results The results indicate that peer meetings created an interactive learning environment in which students learned about themselves, their skills and their abilities as novice professionals. Students also mentioned conditions for a well-functioning group. Conclusion The findings indicate that peer meetings foster the development of reflection skills as part of professional behaviour

Occupational exposure to gases/fumes and mineral dust affect DNA methylation levels of genes regulating expression

Many workers are daily exposed to occupational agents like gases/fumes, mineral dust or biological dust, which could induce adverse health effects. Epigenetic mechanisms, such as DNA methylation, have been suggested to play a role. We therefore aimed to identify differentially methylated regions (DMRs) upon occupational exposures in never-smokers and investigated if these DMRs associated with gene expression levels. To determine the effects of occupational exposures independent of smoking, 903 never-smokers of the LifeLines cohort study were included. We performed three genome-wide methylation analyses (Illumina 450 K), one per occupational exposure being gases/fumes, mineral dust and biological dust, using robust linear regression adjusted for appropriate confounders. DMRs were identified using comb-p in Python. Results were validated in the Rotterdam Study (233 never-smokers) and methylation-expression associations were assessed using Biobank-based Integrative Omics Study data (n = 2802). Of the total 21 significant DMRs, 14 DMRs were associated with gases/fumes and 7 with mineral dust. Three of these DMRs were associated with both exposures (RPLP1 and LINC02169 (2x)) and 11 DMRs were located within transcript start sites of gene expression regulating genes. We replicated two DMRs with gases/fumes (VTRNA2-1 and GNAS) and one with mineral dust (CCDC144NL). In addition, nine gases/fumes DMRs and six mineral dust DMRs significantly associated with gene expression levels. Our data suggest that occupational exposures may induce differential methylation of gene expression regulating genes and thereby may induce adverse health effects. Given the millions of workers that are exposed daily to occupational exposures, further studies on this epigenetic mechanism and health outcomes are warranted