What drives change in neonatal intensive care units? A qualitative study with physicians and nurses in six European countries.

BACKGROUND: Innovation is important to improve patient care, but few studies have explored the factors that initiate change in healthcare organizations. METHODS: As part of the European project EPICE on evidence-based perinatal care, we carried out semi-structured interviews (N = 44) with medical and nursing staff from 11 randomly selected neonatal intensive care units in 6 countries. The interviews focused on the most recent clinical or organizational change in the unit relevant to the care of very preterm infants. Thematic analysis was performed using verbatim transcripts of recorded interviews. RESULTS: Reported changes concerned ventilation, feeding and nutrition, neonatal sepsis, infant care, pain management and care of parents. Six categories of drivers to change were identified: availability of new knowledge or technology; guidelines or regulations from outside the unit; need to standardize practices; participation in research; occurrence of adverse events; and wish to improve care. Innovations originating within the unit, linked to the availability of new technology and seen to provide clear benefit for patients were more likely to achieve consensus and rapid implementation. CONCLUSIONS: Innovation can be initiated by several drivers that can impact on the success and sustainability of change.

Genetic literacy and experiential knowledge on sickle cell disease among Canadian- and foreign-born male and female Anglophone and Francophone youth in Canada.

OBJECTIVES: Growing global human mobility raises concerns about impacts on global health, particularly on the prevalence of sickle cell disease. This research unveiled the level of genetic literacy on sickle cell disease of male and female Anglophone and Francophone youth living in Canada. The research responded to questions about whether the type of information about the disease has been more prevalent among the youth's family, friends, acquaintances and school circles, and the influence of such information on shaping the current youth level of genetic literacy on the disease. METHODS: An online survey hosted by a Canadian university (2019/2020) platform was conducted with youth (n=87, aged 16-29) recruited in their natural, social environments in seven Canadian provinces. Data analysis used descriptive statistics and manual qualitative content analysis. RESULTS: Youth, mostly Canadian-born, 71.42 % Francophones and 67.12 % Anglophones, descend from parents who had been born in countries at risk for the disease. Results indicated that experiential knowledge is due to the familiarity with the disease occurrence among family members and acquaintances. Participants did not comment about how academic-gained knowledge could influence their own decision on becoming a parent. CONCLUSIONS: Independently of their country of birth, Canadian youth seem to have unmet information needs: a complex challenge requiring creativity and simplicity to deliver information through attractive media.

[A center in Paris for screening and counselling sickle cell patients and carriers]. / Centre d'information et de dépistage de la drépanocytose a Paris.

Prevention of sickle cell anemia, a severe and painful disease, relies on carrier detection and information, and on prenatal diagnosis with the possibility of medical abortion. Here we report the first results of a medical and welfare program launched in Paris 20 months ago and dedicated to sickle cell carrier screening and information.

Prescription and Integration of Accredited Mobile Apps in Catalan Health and Social Care: Protocol for the AppSalut Site Design.

BACKGROUND: The use of new mobile technologies in the health and social welfare sectors is already a reality. The ICT Social Health Foundation, in accordance with the technology strategy of the Catalan government's Ministry of Health and its Ministry of Labour, Social Affairs and Families, is leading an initiative to create a public library of apps for its AppSalut Site. OBJECTIVE: The objective of this paper is to present an account of the design of the project, with a global perspective, applied to the Catalan ecosystem, which can be divided into 3 areas: the framework governing the recommendation and prescription of apps, the subset of interoperability for mobile environments, and the data storage infrastructure. METHODS: The security and credibility of the apps included in the catalog is ensured by submitting them to an accreditation process in the public domain that provides users with the guarantee that they are fit for purpose and trustworthy for the management and care of their health, while providing health care professionals with the possibility of recommending the apps in the doctor's surgery, as well as adding the information generated by the users' mobile devices to the information systems of the various organizations concerned. RESULTS: An examination of the abovementioned areas suggests possibilities for improvements in the future. The experience obtained from the development of this element has shown the heterogeneity of the vocabularies used, as expected, due to the lack of awareness on the part of the developers regarding the need to standardize the information generated by the app, requiring the foundation to take on the role of consultant. CONCLUSIONS: The project has evolved in keeping with changes in the technological and social paradigm and responds very satisfactorily to the needs posed to it. It can be seen as a landmark experience in mobile strategies in the fields of health and welfare of any public health system. The experience has shown itself to be feasible in organizational terms, necessary in any attempt to integrate mobile technologies into public health practice, and a global pioneer in the field. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/11414.

Esperando o Messias: reflexão sobre os bebês nascidos para curar um irmão / Expecting the Messiah: considerations about designer's babies to cure a sibling

Após o primeiro bebê de proveta, surgem, cada vez mais, novidades no campo da procriação que nos fazem refletir sobre o funcionamento psíquico das pessoas envolvidas. Este artigo objetivou refletir sobre a gravidez programada na esperança de dar à luz um recém-nascido compatível para curar a anemia falciforme de um filho mais velho. Foram realizadas três entrevistas com grávidas portadoras do gene da anemia falciforme. Por meio da análise, constatou-se que o desejo de gravidez é voltado para a cura da doença da criança mais velha, e que a gravidez é desinvestida e pobre em representações sobre a futura criança. Assim sendo, observou-se a necessidade de novas pesquisas que abordem essa temática e avalie os possíveis riscos psicológicos.

Since the first test-tube babies, the pace of innovation is quickly increasing in the field of procreation. But all of these scientific discoveries of recent times make us reflect on the psychological effects on those involved. This article was aimed to reflect on planned pregnancy in the hope of giving birth to a child capable of helping to cure sickle cell anemia in an older sibling. Three recorded interviews were made with pregnant women who have had genetic counseling in sickle cell disease centers in Parisian hospitals. This study indicates that the woman's desire to become pregnant is dedicated to curing the serious disease of an older child. The pregnancy itself is disinvested and representations of the future baby are poor. Thus, further research is needed to understand this current issue and to evaluate psychological risks.