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Objective: To examine the projects of professionalisation and institutionalisation forming health care professions' engagement in quality improvement collaborative (QIC) implementation in Denmark, and to analyse the synergies and tensions between the two projects given the opportunities afforded by the QICs. Methods: This was a cross-sectional interview study with professionals involved in the implementation of two national QICs in Denmark involving 23 individual interviews and focus group discussions with 75 people representing different professional groups. We conducted a reflexive thematic analysis of the data, drawing on institutional contributions to organisational studies of professions. Results: Study participants engaged widely in QIC implementation. This engagement was formed by a constructive interplay between the professions' projects of professionalisation and institutionalisation, with only few tensions identified. The project of professionalisation relates to a self-oriented agenda of contributing professional expertise and promoting professional recognition and development, while the project of institutionalisation focuses on improving health care processes and outcomes and advancing quality improvement. Both projects were largely similar across professional groups. The interplay between the two projects was enabled by the bottom-up approach to implementation, participation of QI specialists, and a clear focus on developing and delivering high-quality patient care. Conclusions: Future strategies for QIC implementation should position QICs as a framework that promotes the integration of professions' projects of professionalisation and institutionalisation to successfully engage professionals in the implementation process, and thereby optimise the effectiveness of QICs in health care. [ABSTRACT FROM AUTHOR]

Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome is characterized by the absence or underdevelopment of the uterus and upper part of the vagina. It is usually diagnosed during adolescence, and the present study investigates how women experience and negotiate to live with MRKH syndrome long-term. From January to March 2021, eighteen Danish women with MRKH syndrome participated in semi-structured interviews via video conference. The mean time since diagnosis was 11.5 years. A thematic analysis using the life course framework as a theoretical approach was applied. The analysis identified the diagnosis as a turning point, that dramatically altered the women's imagined futures. Not conforming to dominant social norms regarding sexuality and pregnancy meant that the women continuously managed and negotiated the meaning and impact of MRKH syndrome in relation to the five principles of the life course perspective: (1) Lifelong development, (2) Timing, (3) Human agency, (4) Linked lives, and (5) Historical time and place. Using the life course framework contributed to a holistic understanding of life with MRKH syndrome by showing how the meaning and consequences of the congenital condition changed over time and in adaptation to gendered and age-related social norms and expectations. The perceived meaning and impact of living with Mayer-Rokitansky-Küster-Hauser syndrome change over time, and women's information and support needs thus change accordingly Sensitive, clinical communication is essential when discussing treatment options Online communities may provide support and reduce feelings of loneliness [ABSTRACT FROM AUTHOR]

Objective: To examine women and their partners' experience of major postpartum haemorrhage (PPH). Design: A qualitative interview study. Setting: Two Labour and Delivery Units in Denmark. Population: Women who experienced major PPH (≥1 litre within 2 hours after vaginal birth). Methods: Semi‐structured interviews were conducted with 15 women and nine partners (nine joint interviews, six individual interviews). Interviews were analysed using thematic analysis. Main outcome measures: A qualitative description of women and their partners' experiences. Results: Three major themes were identified. (1) 'From birth to emergency' included factors that increased concern in women and their partners, such as 'incomprehensible' medical terminology, a tense atmosphere, and alarm call. Transfer to the operating theatre was experienced as the most devastating part of major PPH. (2) 'Feeling safe during an emergency' described factors that supported the women and their partners' management of the situation such as brief explanations from a few healthcare professionals and reassurance that the healthcare professionals were in control of the situation. The pain was experienced as severe, but acceptable. (3) 'Family unity challenged' described how family bonding was supported by positioning the partner at the head of the bed and by keeping the baby on the woman's chest. Conclusions: Several factors such as small gestures from healthcare professionals and appropriate organisation of the PPH can make a difference to the woman and her partner's experience of major PPH. Particularly, efforts that support family bonding are greatly valued by women and their partners. [ABSTRACT FROM AUTHOR]

Background: In Denmark, all pregnant women are offered foetal diagnostic exams in the public healthcare system. Although the participation rate is 97%, an increase is seen in pregnant women's purchase of private scans. Aim: The aim of this study is to gain a deeper understanding of pregnant women's considerations and experiences regarding private scans. Method: This phenomenological-hermeneutical interview-based study includes 10 pregnant women who received private clinic scans. Participants were recruited from private clinics and social media. Findings: Three themes were identified: "Accessibility and affordable", "Control of pregnancy" and "Two different worlds". The pregnant women describe the purchased scans as accessible and affordable, and they use private scans to control their pregnancy. They experience differences and similarities between private and public scans. Especially a clear difference in the purpose and expectations towards them. Conclusion: Pregnant women choose private clinic scans not only for pure entertainment but with rational considerations. [ABSTRACT FROM AUTHOR]

Despite reporting an overall normal life, survivors of heritable retinoblastoma face numerous physical and psychosocial issues. In particular, reproductive decision‐making is often complex and difficult. This study aims to examine survivors' reflections on passing on heritable retinoblastoma to their children, how survivors approach their reproductive choices, and how the healthcare system can optimize counseling and support. Semi‐structured interviews with Danish adult survivors of heritable retinoblastoma were qualitatively analyzed to explore their experiences. Participants were recruited from the Retinoblastoma Survivorship Clinic, Aarhus University Hospital, Denmark. Thematic data analysis was conducted followed by a condensing process specifically for the subthemes relating to reproductive choices. A common subtheme for all participants was a strong wish to avoid passing on retinoblastoma to their children. The participants emphasized the various medical, practical, emotional, and moral issues impacting their final reproductive choice in the process of family planning to conceive a child unaffected by retinoblastoma. Some had no option other than to conceive naturally and hope for an unaffected baby; while others weighed the pros and cons of choosing natural conception with prenatal testing and then considering termination of pregnancy (in case of an affected fetus) versus choosing fertility treatment with preimplantation genetic testing to achieve an unaffected pregnancy. Several participants underlined the complexity of their decisions, and also expressed feelings of guilt, both toward their affected child, and guilt for putting their partner through many difficult decisions and obstacles due to their genetic condition. Our findings demonstrate how one family‐planning decision is not unequivocally "better" or easier than another. Healthcare professionals must provide the necessary information and tools to support the individual's unique decision‐making process. Survivors' autonomy and individual needs, as well as the numerous and diverse aspects of heritable retinoblastoma, should be carefully considered. [ABSTRACT FROM AUTHOR]

Objective: To investigate if the Down syndrome phenotype differs according to the result of first‐trimester combined screening (FTS). Method: We included all Down syndrome cases diagnosed by karyotype in pregnancy or after birth in Denmark during 2005–2018. We compared screen positive (odds ≥1:300) and screen negative (odds <1:300) cases as well as screen result subgroups with respect to anthropometrics, congenital malformations, childhood diseases, and hospitalization. Results: Absolute measures of fetal and birth anthropometrics were comparable between groups. A prenatal malformation diagnosis was more prevalent among screen positive than screen negative cases. Analyses suggested that this could reflect a detection bias. Cases with a screen result of 1:2–1:10 had a higher probability of being diagnosed with a malformation prenatally and with severe congenital heart disease (CHD) postnatally compared with a result of 1:11–1:300. Screen positive cases more often had non‐severe CHD but less often a non‐heart malformation compared with screen negative cases, while proportions of severe CHD were similar in these groups. Data on hospitalizations showed inconsistent results. Conclusion: The 1:300 screening threshold had limited or no value in predicting Down syndrome phenotype severity. In contrast, cases with a screen result between 1:2 and 1:10 may represent a more severe phenotype. Key points: What's already known about this topic? The severity of the Down syndrome phenotype is variable and unpredictable.The first‐trimester combined screening (FTS) is based on measures, such as nuchal translucency, known to be associated with adverse outcomes, suggesting predictive potential. What does this study add? The severity of the Down syndrome phenotype did not consistently differ between screen positive (odds at FTS ≥1:300) and screen negative (odds at FTS <1:300) cases.Screen positive Down syndrome cases with odds 1:2–1:10 may, however, be at risk of a severe phenotype.In screen negative Down syndrome cases, the sensitivity of a prenatal diagnosis of congenital malformations may be lower than that among screen positive Down syndrome cases. [ABSTRACT FROM AUTHOR]