Experiences of vaginal lengthening treatment and sexual well-being in women with Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome: An interview study.

OBJECTIVE: To explore how women with Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome experience dilation or surgical vaginal lengthening treatment, and their current sexual well-being. DESIGN: A qualitative interview study. SETTING: Denmark. POPULATION: Women aged ≥25 years diagnosed with MRKH syndrome. METHODS: Semi-structured video interviews were conducted with 18 women. Interviews lasted a median of 92 min and were digitally recorded, transcribed and anonymised. Data were analysed using thematic analysis. MAIN OUTCOME MEASURES: A qualitative analysis of women's experiences. RESULTS: The analysis identified three themes. Firstly, Experiences with dilation treatment revealed dilation as an awkward routine, especially for adolescents living with parents and yet to sexually debut. While some experienced successful vaginal lengthening, others faced treatment failure leading to frustration and self-blame. Secondly, Experiences with neovaginal surgery described the procedure as extremely painful but resulting in a 'normal size' vagina. Some women felt that the procedure had negatively impacted their self-confidence, and all underscored the importance of maturity before opting for surgery. Lastly, Current sex life and sexual well-being indicated a well-functioning sex life for many women, but with reported low sexual confidence and genital self-image due to the perceived 'deviance' of their genitalia. CONCLUSIONS: For women with MRKH syndrome, vaginal lengthening treatment, whether through dilation or surgery, may result in a 'normal size' vagina. However, according to the women's experiences, vaginal lengthening treatment does not adequately foster positive sexual esteem and genital self-image.

How institutional logics shape the adoption of virtual reality in mental health care: A qualitative study.

Objective: To analyse institutional logics' role in adopting virtual reality in mental health care. Methods: Data were collected via qualitative, semi-structured interviews with four frontline staff and seven administrative and service staff, two focus group interviews with three frontline staff and four administrative and service staff, and via participant observation in meetings between stakeholders working on virtual reality. Data were collected from May 2021 to February 2022, analysed using thematic analysis, and theoretically driven by the framework of Institutional logics. Results: We identified two different forms of institutional logics being drawn upon by frontline staff and administrative and service staff, respectively, when working with the adoption of virtual reality in mental health care. Frontline staff drew mainly on a Professional logic; administrative and service staff drew on a Diffusion logic. Each logic defined a unique focal point, causal pathway, and perceptions of a meaningful adoption process for virtual reality. Conclusions: By taking institutional logics as our theoretical and analytical point of departure, this study demonstrates how the meaning of virtual reality and its adoption in mental health care is grounded in multiple and sometimes conflicting institutional logics. Acknowledging the existence and influence of often multiple institutional logics in the adoption process is crucial to guide the future adoption of virtual reality in mental health care. Organising collaborative venues for stakeholders where their multiple institutional logics are made the subject of joint reflection is essential to counter frictions.

Understanding the Diagnostic Odyssey of Women with Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome in Denmark: A Qualitative Interview Study.

STUDY OBJECTIVE: The diagnosis of Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome is often a lengthy process that typically occurs during late adolescence. To support optimized and patient-centered care, this study aimed to investigate how women with MRKH syndrome experience the diagnostic process. METHODS: From January 2021 to March 2021, we conducted in-depth interviews with 18 Danish women (≥25 years) diagnosed with MRKH syndrome. The interviews lasted a median of 92 minutes (range: 67-117). Data were analyzed using thematic analysis. RESULTS: As teenagers or young women at the time, all women had experienced the diagnostic process in the nonspecialized healthcare sector as deeply upsetting due to distressing gynecological examinations, use of inappropriate language, and considerable diagnostic delay. When reaching the specialized health care sector, questions could finally be answered, but this information and support did not significantly alter their feelings of being "deviant" or "flawed". The women continued their diagnostic odyssey beyond the health care system and found online communities that gave them valuable support in living with MRKH syndrome. CONCLUSION: Women experience the diagnostic odyssey of MRKH syndrome as upsetting and potentially traumatizing beyond the diagnosis. Healthcare professionals can influence young women's understanding and experience of MRKH syndrome by using inclusive language (eg, avoiding "deformity") and addressing all that is normal and functioning (eg, external genitalia and potential for sexual pleasure). In nonurgent conditions, young women should be given the choice to delay a genital examination.

Encounters with public and professional understandings of Down syndrome: A qualitative study of parents' experiences.

BACKGROUND: The meanings of neurodevelopmental conditions are socially and culturally defined. We explored how parents of a child with Down syndrome experienced public and professional understandings of Down syndrome. METHOD: Qualitative interviews with 25 parents of a child with Down syndrome living in Denmark. From a reflexive thematic analysis, we developed themes describing understandings (i.e., attitudes or perceptions) of Down syndrome. RESULTS: The parents experienced that the Down syndrome diagnosis acted as a 'label'; this had perceived positive and negative consequences for the child. The parents felt others understood Down syndrome as severe and undesirable. This attitude was tied to the existence of prenatal screening. Finally, to the parents, professional support for their child expressed an understanding of children with Down syndrome as valued individuals. CONCLUSIONS: Parents encountered ambiguous understandings of Down syndrome. This should be recognised by professionals who may shape such understandings.

Has the introduction of increased genetic prenatal testing affected rates of termination of pregnancy due to fetal abnormality?

OBJECTIVE: Genetic high-resolution analyses and improved diagnostic imaging have impacted the ability to detect fetal disorders. It is unknown if this resulted in an alteration in the number of terminations of pregnancy due to fetal anomalies (TOPFA). The objective was to describe the incidence and indication of TOPFA. METHODS: A descriptive study based on records from the Regional Abortion Council in the Central Denmark Region from 2008 to 2021 consisting of 1895 TOPFA. RESULTS: A consistent incidence of TOPFA was observed, accounting for 0.96% of the total births during that period. When examining fetal indications, there was a small increase in the occurrence of genetic aberrations, primarily caused by deletions, duplications, and single nucleotide variations, whereas the number of chromosomal aberrations remained stable. Of 35.5% of the cases with malformations, the central nervous system was the most affected organ system, followed by malformations of the heart 29.6%. Overall, the total number of cases remained stable. DISCUSSION AND CONCLUSION: Unexpectedly, despite the development of new diagnostic tools, the incidence of TOPFA from 2008 to 2021 remained stable. However, the number of cases with genetic aberrations increased. This may be attributed to increased genetic testing for fetuses with identified malformations, resulting in more accurate diagnoses.

Engaging health care professionals in quality improvement: A qualitative study exploring the synergies between projects of professionalisation and institutionalisation in quality improvement collaborative implementation in Denmark.

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.

A life course perspective on Mayer-Rokitansky-Küster-Hauser syndrome: women's experiences and negotiations of living with an underdeveloped uterus and vagina.

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.IMPLICATIONS FOR REHABILITATIONThe perceived meaning and impact of living with Mayer-Rokitansky-Küster-Hauser syndrome change over time, and women's information and support needs thus change accordinglySensitive, clinical communication is essential when discussing treatment optionsOnline communities may provide support and reduce feelings of loneliness.

A decade of change - lessons learned from prenatal diagnostics in Central Denmark region in 2008-2018.

INTRODUCTION: In 2011, it was decided to implement chromosomal microarray in prenatal testing in the Central Denmark Region, mainly due to the expected higher diagnostic yield. Chromosomal microarray was introduced gradually for an increasing number of pregnancies and without a transition period where both karyotyping and chromosomal microarray were performed: first malformations (2011), then large nuchal translucency (2013), then high risk at combined first trimester risk screening (2016) and finally for all indications (2018). This retrospective study summarizes 11 years of using chromosomal microarray in invasive prenatal testing and presents the effect on diagnostic yield and turnaround time. Furthermore, the concerns when introducing chromosomal microarray are presented and discussed. MATERIAL AND METHODS: Registry data from the Danish Fetal Medicine Database, the regional fetal medicine database, the Danish Cytogenetic Central Register and the local laboratory database at Department of Clinical Genetics were all combined, and a cohort of 147 158 singleton pregnancies with at least one ultrasound examination was established RESULTS: Of the 147 158 pregnancies, invasive sampling was performed (chorionic villi or amniocytes) in 8456, corresponding to an overall invasive rate of 5.8%. Between 2016 and 2018, 3.4% (95% confidence interval [CI] 2.8-4.2%; n = 86) of the invasive samples (n = 2533) had a disease causing copy number variant and 5.3% (95% CI 4.4-6.2%; n = 133) had trisomies and other aneuploidies. The turnaround time more than halved from 14 days to an average of 5.5 days for chorionic villus sampling. CONCLUSIONS: Chromosomal microarray identified 5.3% trisomies and 3.4% copy number variants, thereby increased the diagnostic yield by more than 64% compared with karyotype only and it also more than halved the turnaround time. Some preliminary concerns proved real, eg prenatal counseling complexity, but these have been resolved over time in a clinical path with expert consultations.

3D printed skulls in court - a benefit to stakeholders?

Forensic pathologists may use 3D prints as demonstrative aids when providing expert testimony in court of law, but the effects remain unclear despite many assumed benefits. In this qualitative study, the effects of using a 3D print, demonstrating a blunt force skull fracture, in court were explored by thematic analysis of interviews with judges, prosecutors, defence counsels, and forensic pathologists with the aim of improving the expert testimony. Five semi-structured focus groups and eight one-to-one interviews with a total of 29 stakeholders were transcribed ad verbatim and analysed using thematic analysis. The study found that a highly accurate 3D print of a skull demonstrated autopsy findings in detail and provided a quick overview, but sense of touch was of little benefit as the 3D print had different material characteristics than the human skull. Virtual 3D models were expected to provide all the benefits of 3D prints, be less emotionally confronting, and be logistically feasible. Both 3D prints and virtual 3D models were expected to be less emotionally confronting than autopsy photos. Regardless of fidelity, an expert witness was necessary to translate technical language and explain autopsy findings, and low-fidelity models may be equally suited as demonstrative aids. The court infrequently challenged the expert witnesses' conclusions and, therefore, rarely had a need for viewing autopsy findings in detail, therefore rarely needing a 3D print.

Impact of a prenatal screening program on the Down syndrome phenotype: An interrupted time series analysis.

INTRODUCTION: We hypothesized that children with Down syndrome who were born after the implementation of first-trimester combined screening for trisomy 13, 18, and 21 and a second-trimester ultrasound scan in Denmark would show a milder syndrome phenotype. We investigated the birth biometry, prevalence of congenital malformations, and early childhood morbidity of children with Down syndrome before and after implementation of this screening program. MATERIAL AND METHODS: A nationwide register-based study of all live born singletons with Down syndrome in Denmark from 1995 to 2018. In interrupted time series analyses, we studied the temporal developments in birth biometry, prevalence of congenital malformations, and early childhood morbidity related to the implementation of a national prenatal screening program. RESULTS: We included 602 singletons with Down syndrome born before and 308 after implementation of the screening program. Z-scores of birthweight and head circumference increased over time before screening, but this temporal development changed after implementation by -0.05 (95% confidence interval [CI]: -0.11 to 0.01) and -0.05 (95% CI -0.12 to 0.02), respectively. Just after implementation, the prevalence of non-severe congenital heart disease decreased (relative change in odds 0.48 [95% CI: 0.24-0.94]). For severe congenital heart disease, atrioventricular septal defect, and non-heart malformations, this change was 1.16 (95% CI: 0.56-2.41), 0.95 (95% CI: 0.43-2.03), and 0.98 (95% CI: 0.33-2.76), respectively. For all malformations, pre-existing temporal developments did not change following implementation of screening. The implementation was associated with higher odds of admission to a neonatal intensive care unit (relative change 1.98 [95% CI: 0.76-5.26]) and an increased risk of hearing impairment (risk difference 3.4% [95% CI: -0.4% to 7.1%]). In contrast, the implementation was not associated with the incidence of hospital admissions by 2 years of age or with the probability of a thyroid disorder. CONCLUSIONS: After implementation of a national prenatal screening program, we did not observe a milder Down syndrome phenotype apart from an apparent reduction in the proportion of children with non-severe congenital heart disease; this result is, however, limited by small numbers.

Healthcare providers' perceptions and expectations of video-assisted debriefing of real-life obstetrical emergencies: a qualitative study from Denmark.

OBJECTIVES: Video-assisted debriefing (VAD) of real-life obstetrical emergencies provides an opportunity to improve quality of care, but is rarely used in clinical practice. A barrier for implementation is the expected mental reservations among healthcare providers. The aim of this study was to explore healthcare providers' perceptions and expectations of VAD of real-life events. SETTING: Participants were recruited from two Labour and Delivery Units in Denmark. In both units, VAD of real-life obstetrical emergencies had never been conducted. PARTICIPANTS: 22 healthcare providers (10 physicians, 9 midwives and 3 nursing assistants). During the study period (August-October 2021), semi-structured, individual interviews were conducted. Interviews were analysed using thematic analysis. PRIMARY AND SECONDARY OUTCOME MEASURES: A qualitative description of healthcare providers' perceptions and expectations of VAD of real-life events. RESULTS: Three major themes were identified: (1) Video-assisted debriefing (VAD) as an opportunity for learning: All participants expected VAD to provide an opportunity for learning and improving patient care. All participants expected the video to provide a 'bigger picture', by showing 'what was actually done' instead of 'what we believed was done'. (2) Video-assisted debriefing (VAD) as a cause for concern: The primary concern for all participants was the risk of being exposed as less competent. Participants were concerned that being confronted with every minor detail of their clinical practice would enhance their self-criticalness. (3) Preconditions for video-assisted debriefing (VAD): Participants emphasised the importance of organisational support from management. In addition, creating a safe environment for VAD, for example, by using only expert debriefers was considered an essential precondition for successful implementation. CONCLUSIONS: The risk of being exposed as less competent was a barrier towards VAD of real-life events. However, the majority found the educational benefits to outweigh the risk of being exposed.

Implementation through translation: a qualitative case study of translation processes in the implementation of quality improvement collaboratives.

BACKGROUND: Quality improvement collaboratives (QICs) are used extensively to implement quality improvement in healthcare, and current research is demonstrating positive yet varying evidence. To interpret the effectiveness results, it is necessary to illuminate the dynamics of QIC implementation in specific contexts. Using Scandinavian institutionalist translation theory as a theoretical framework, this study aims to make two contributions. First, we provide insights into the dynamics of the translation processes inherent in QIC implementation. Second, we discuss the implications of the translation processes as experienced by participating actors. METHODS: We used empirical data from a qualitative case study investigating the implementation of QICs as an approach to quality improvement within a national Danish healthcare quality program. We included two diverse QICs to allow for exploration of the significance of organizational complexity for the translation processes. Data comprised qualitative interviews, participant observation and documentary material. RESULTS: Translation was an inherent part of QIC implementation. Key actors at different organizational levels engaged in translation of their implementation roles, and the QIC content and methodology. They drew on different translation strategies and practices that mainly materialized as kinds of modification. The translations were motivated by deliberate, strategic, and pragmatic rationales, contingent on combinations of features of the actors' organizational contexts, and the transformability and organizational complexity of the QICs. The findings point to a transformative power of translation, as different translations led to various regional and local QIC versions. Furthermore, the findings indicate that translation affects the outcomes of the implementation process and the QIC intervention. Translation may positively affect the institutionalization of the QICs and the creation of professional engagement and negatively influence the QIC effects. CONCLUSION: The findings extends the current research concerning the understanding of the dynamics of the translation processes embedded in the local implementation of QICs, and thus constitute a valuable contribution to a more sustainable and effective implementation of QICs in healthcare improvement. For researchers and practitioners, this highlights translation as an embedded part of the QIC implementation process, and encourages detailed attention to the implications of translation for both organizational institutionalization and realisation of the expected intervention outcomes.

Women and partners' experience of major postpartum haemorrhage: a qualitative study.

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.

Experiences and attitudes of Danish men who were sperm donors more than 10 years ago; a qualitative interview study.

BACKGROUND: More knowledge about the long-term impact of sperm donation is essential as the donor's attitude towards donation may change over time. Personal and social developments may prompt a rethinking of previous actions and decisions, or even regret. Thus, the aim of this study was to explore the experiences and attitudes of men who were sperm donors more than 10 years ago. METHODS: From May to September 2021, semi-structured, qualitative interviews were conducted with 23 former donors (> 10 years since last donation) from Cryos International sperm bank. Two participants were non-anonymous donors and 21 were anonymous. The interviews were conducted by phone or via video (mean 24 minutes). All interviews were recorded, transcribed verbatim and rendered anonymous. Data were analyzed using thematic analysis. RESULTS: The analysis showed that most men had been donors for monetary and altruistic purposes, and now considered sperm donation as a closed chapter that was 'unproblematic and in the past'. Most men valued anonymity and emphasized the non-relatedness between donor and donor conceived offspring. Knowledge about recipients and donor offspring was seen as 'damaging' as it could create unwanted feelings of relatedness and responsibility towards them. All men acknowledged donor conceived persons' potential interests in knowing about their genetic heritage in order to understand appearance and personal traits, but also emphasized the donors' rights to anonymity. Potential breach of anonymity was generally considered 'highly problematic' as it was expected to disturb their families and force a relationship on them. CONCLUSION: This study reports on former donors who might not have volunteered for research due to lack of interest or protection of privacy. The majority of men valued anonymity and clearly demarcated a line between sperm donation and fatherhood, which was enforced by not knowing about the donor offspring or recipients.

Is the first-trimester combined screening result associated with the phenotype of Down syndrome? A population-based cohort study.

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.

Danish heritable retinoblastoma survivors' perspectives on reproductive choices: "It's important for me, not to pass on this condition".

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.

Why freebirth in a maternity system with free midwifery care? A qualitative study of Danish women's motivations and preparations for freebirth.

OBJECTIVE: Even in maternity care systems with free midwifery care, some women intentionally choose to birth unattended by any health professional (freebirth). Women who choose freebirth represent an enigma for many, and a provocation to some. However, people who do not conform to dominant medical practices are a source of valuable insights that can reveal shortcomings in the mainstream health care system. Thus, the aim of this study was to explore and understand women's motivations and preparations for freebirth. METHODS: The study was informed by the theoretical lens of the 'undisciplined patient'. Qualitative, in-depth interviews were performed with ten Danish women, who for their most recent birth had planned to freebirth. Data were analysed using reflexive thematic analysis. RESULTS: Four themes were identified. "The standard system is not for me" describes negative experiences during previous births and the desire for more individualised support. "Re-establishing trust in myself" describes the women's quest for recognizing their own needs and re-building autonomy and inner strength. "I do my research" describes how the women sought new ways of knowing and prioritised experiential knowledge. And finally, "I create my safe space" describes the women's efforts to create the best possible physical and emotional space for themselves and their babies in order to have a safe and autonomous birth experience. CONCLUSION: Freebirth is not undertaken lightly or without preparation by women. Improved continuity of care as well as greater flexibility in hospital guidelines could accommodate some of these women's demand for autonomy in birth.

Genetic testing in adult survivors of retinoblastoma in Denmark: A study of the experience and impact of genetic testing many years after initial diagnosis.

BACKGROUND: Survivors with heritable retinoblastoma (RB) face a high risk for second primary cancer and RB in their children. Knowledge of heredity can support second cancer surveillance, convey reproductive options or early diagnosis of RB in their offspring. Currently, all newly diagnosed Danish patients with RB are offered genetic testing, as opposed to a minority of survivors diagnosed before available DNA testing. OBJECTIVE: To examine RB survivors' response to unsolicited contact, uptake of genetic testing, and RB1 variant detection rate, and to qualitatively evaluate the experience and overall impact of genetic testing for heritable RB. METHODS: Genetically untested adult RB survivors were invited to receive genetic counseling, undergo genetic testing for heritable RB and complete an eye examination. The number of responses, uptake of genetic testing and genetic results are descriptively reported. Additionally, responding survivors participated in a qualitative interview study of the perceived impact of genetic testing. Interviews were audio-recorded, transcribed verbatim and thematically analyzed. RESULTS: Among invited RB survivors, 58% responded. Of these, 88% opted for genetic counseling and genetic testing. A diagnosis of heritable RB was established in 23% of RB survivors. Interestingly, all of these survivors were unilaterally affected. Analysis of data from the interviews revealed three recurring themes regarding the impact of genetic counseling and testing several years after initial diagnosis: 'Risk of what?', 'Knowledge is important' and 'Impact of the result'. The possible risk ofsecond cancer and RB in their children was new knowledge for several participants; however, in general, the participants appreciated receiving genetic information and certainty about heredity. Accordingly, the impact of genetic counseling and testing was perceived in a positive way. CONCLUSION: Overall, RB survivors valued the opportunity to receive genetic counseling and undergo genetic testing many years after diagnosis. Responding RB survivors appreciated the invitation to test, felt well-informed and described little decisional conflict regarding their decision-making, valuing the genetic information and certainty. Heritable RB was confirmed in 23% of the previously untested RB survivors. These individuals emphasized the value of knowing and being proactive regarding both reproduction and cancer risk.

The Danish health care quality programme: Creating change through the use of quality improvement collaboratives.

Policy-makers worldwide place quality in health care high on their agendas. Inspired by global trends within health care governance, there has been an increase in patient-oriented and network-based models for quality improvement. In 2015, the Danish Government introduced the Danish Health Care Quality Programme (DHCQP) for the entire Danish health care system in line with this development. For the first time in Denmark, the DHCQP introduced network-based quality improvement collaboratives (QICs) as a model for the implementation of a national quality improvement reform. This article presents the organisational set up and anticipated effects of using QICs within the DHCQP. The Danish set-up is related to the common international use of QICs and the existing evidence for their effectiveness and implementation. The analysis demonstrates a novel organisational set-up embedded in the organisation of the QICs. Furthermore, the article points to two main trends in the DHCQP, namely, centralisation of quality improvement strategies and integration of quality improvement work in clinical practices, and furthermore proposes a need for future research concerning implementation of QICs. Particularly, there is a need to investigate the different activities and organisational mechanisms in the implementation process and how these influence the implementation and functioning of QICs.

Factors that impact on women's decision-making around prenatal genomic tests: An international discrete choice survey.

OBJECTIVE: We conducted a survey-based discrete-choice experiment (DCE) to understand the test features that drive women's preferences for prenatal genomic testing, and explore variation across countries. METHODS: Five test attributes were identified as being important for decision-making through a literature review, qualitative interviews and quantitative scoring exercise. Twelve scenarios were constructed in which respondents choose between two invasive tests or no test. Women from eight countries who delivered a baby in the previous 24 months completed a DCE presenting these scenarios. Choices were modeled using conditional logit regression analysis. RESULTS: Surveys from 1239 women (Australia: n = 178; China: n = 179; Denmark: n = 88; Netherlands: n = 177; Singapore: n = 90; Sweden: n = 178; UK: n = 174; USA: n = 175) were analyzed. The key attribute affecting preferences was a test with the highest diagnostic yield (p < 0.01). Women preferred tests with short turnaround times (p < 0.01), and tests reporting variants of uncertain significance (VUS; p < 0.01) and secondary findings (SFs; p < 0.01). Several country-specific differences were identified, including time to get a result, who explains the result, and the return of VUS and SFs. CONCLUSION: Most women want maximum information from prenatal genomic tests, but our findings highlight country-based differences. Global consensus on how to return uncertain results is not necessarily realistic or desirable.