Healthcare professionals’ perceptions of risk in the context of genetic testing for the prediction of chronic disease: a qualitative metasynthesis

Advances in genomic technologies and a growing trend towards stratified and preventive approaches to medicine mean that increasing numbers of individuals may have access to information about their genetic makeup, and their risk of developing diseases. This is likely to impact on healthcare professionals involved in the delivery of genetic tests, or in supporting patients who are affected by a disease with a genetic risk factor. It is therefore important to understand health-care professionals’ perceptions about providing these services, and how they feel about communicating information about genetic risk to patients. This paper provides a systematic review and metasynthesis of qualitative research exploring healthcare professionals’ perceptions of genetic risk in the context of predictive genetic testing for chronic disease. Healthcare professionals expressed a range of reservations about the utility of predictive testing in this context. Professionals judged patients’ understanding of risk information to be limited and subject to bias and a range of sociocultural influences. Concerns about the psychosocial impact of genetic risk information were frequently cited, both in relation to individual patients and the wider impact on their families and communities. The need for provision of multidisciplinary support was described. The concept of responsibility was also an important theme. Healthcare professionals recognized the responsibility that accompanies risk knowledge, and that ultimately this responsibility lies with the patient, not the provider. Our analysis suggests that professionals’ evaluation of the utility of predictive genetic testing is influenced not only by resource deficits, but may also be interpreted as a response to challenging ethical and social issues associated with genetic risk, that are not well aligned with current medical practice

Optimal settings for childbirth.

Many studies highlight how health is influenced by the settings in which people live, work, and receive health care. In particular, the setting in which childbirth takes place is highly influential. The physiological processes of women's labor and birth are enhanced in optimal ("salutogenic," or health promoting) environments. Settings can also make a difference in the way maternity staff practice. This paper focuses on how positive examples of Italian birth places incorporate principles of healthy settings. The "Margherita" Birth Center in Florence and the Maternity Home "Il Nido" in Bologna were purposively selected as cases where the physical-environmental setting seemed to reflect an embedded model of care that promotes health in the context of childbirth. Narrative accounts of the project design were collected from lead professional and direct inspections performed to elicit the key salutogenic components of the physical layout. Comparisons between cases with a standard hospital labor ward layout were performed. Cross-case similarities emerged. The physical characteristics mostly related to optimal settings were a result of collaborative design decisions with stakeholders and users, and the resulting local intention to maximize safe physiological birth, psychosocial wellbeing, facilitate movement and relaxation, prioritize space for privacy, intimacy, and favor human contact and relationships. The key elements identified in this paper have the potential to inform further investigations for the design or renovation of all birth places (including hospitals) in order to optimize the salutogenic component of any setting in any country

Why do women not use antenatal services in low and middle income countries? A metasynthesis of qualitative studies

Background: Almost 50% of women in low & middle income countries (LMIC’s) don’t receive adequate antenatal care. Women’s views can offer important insights into this problem. Qualitative studies exploring inadequate use of antenatal services have been undertaken in a range of countries, but the findings are not easily transferable. We aimed to inform the development of future antenatal care programmes through a synthesis of findings in all relevant qualitative studies. Methods and Findings: Using a pre-determined search strategy, we identified robust qualitative studies reporting on the views and experiences of women in LMIC’s who received inadequate antenatal care. We used meta-ethnographic techniques to generate themes and a line of argument synthesis. We derived policy relevant hypotheses from the findings. We included 21 papers representing the views of more than 1230 women from 15 countries. Three key themes were identified: ‘Pregnancy as socially risky and physiologically healthy’; ‘Resource use and survival in conditions of extreme poverty’and ‘Not getting it right first time’. The line of argument synthesis describes a dissonance between programme design and cultural contexts that may restrict access and discourage return visits. We hypothesize that centralized, risk-focused antenatal care programmes may be at odds with the resources, beliefs and experiences of pregnant women who underuse antenatal services. Conclusions: Our findings suggest that there may be a mis-alignment between current antenatal provision and the social and cultural context of some women in LMIC’s. Antenatal care provision that is theoretically and contextually at odds with local contextual beliefs and experiences are likely to be underused, especially when attendance generates increased personal risks of lost family resource or physical danger during travel; when the promised care is not delivered due to resource constraints; and when women experience covert or overt abuse in care settings

Unexpected Consequences: Women’s experiences of a self-hypnosis intervention to help with pain relief during labour.

Background Self-hypnosis is becoming increasingly popular as a means of labour pain management. Previous studies have produced mixed results. There are very few data on women’s views and experiences of using hypnosis in this context. As part of a randomized controlled trial of self-hypnosis for intra-partum pain relief (the SHIP Trial) we conducted qualitative interviews with women randomized to the intervention arm to explore their views and experiences of using self-hypnosis during labour and birth. Methods Participants were randomly selected from the intervention arm of the study, which consisted of two antenatal self-hypnosis training sessions and a supporting CD that women were encouraged to listen to daily from 32 weeks gestation until the birth of their baby. Those who consented were interviewed in their own homes 8-12 weeks after birth. Following transcription, the interviews were analysed iteratively and emerging concepts were discussed amongst the authors to generate organizing themes. These were then used to develop a principal organizing metaphor or global theme, in a process known as thematic networks analysis. Results Of the 343 women in the intervention group, 48 were invited to interview, and 16 were interviewed over a 12 month period from February 2012 to January 2013. Coding of the data and subsequent analysis revealed a global theme of ‘unexpected consequences’, supported by 5 organising themes, ‘calmness in a climate of fear’, ‘from sceptic to believer’, ‘finding my space’, ‘delays and disappointments’ and ‘personal preferences’. Most respondents reported positive experiences of self-hypnosis and highlighted feelings of calmness, confidence and empowerment. They found the intervention to be beneficial and used a range of novel strategies to personalize their self-hypnosis practice. Occasionally women reported feeling frustrated or disappointed when their relaxed state was misinterpreted by midwives on admission or when their labour and birth experiences did not match their expectations. Conclusion The women in this study generally appreciated antenatal self-hypnosis training and found it to be beneficial during labour and birth. The state of focused relaxation experienced by women using the technique needs to be recognized by providers if the intervention is to be implemented into the maternity service

"Engaging with birth stories in pregnancy: a hermeneutic phenomenological study of women's experiences across two generations"

BACKGROUND: The birth story has been widely understood as a crucial source of knowledge about childbirth. What has not been reported is the effect that birth stories may have on primigravid women's understandings of birth. Findings are presented from a qualitative study exploring how two generations of women came to understand birth in the milieu of other's stories. The prior assumption was that birth stories must surely have a positive or negative influence on listeners, steering them towards either medical or midwifery-led models of care. METHODS: A Heideggerian hermeneutic phenomenological approach was used. Twenty UK participants were purposively selected and interviewed. Findings from the initial sample of 10 women who were pregnant in 2012 indicated that virtual media was a primary source of birth stories. This led to recruitment of a second sample of 10 women who gave birth in the 1970s-1980s, to determine whether they were more able to translate information into knowledge via stories told through personal contact and not through virtual technologies RESULTS: Findings revealed the experience of 'being-in-the-world' of birth and of stories in that world. From a Heideggerian perspective, the birth story was constructed through 'idle talk' (the taken for granted assumptions of things, which come into being through language). Both oral stories and those told through technology were described as the 'modern birth story'. The first theme 'Stories are difficult like that', examines the birth story as problematic and considers how stories shape meaning. The second 'It's a generational thing', considers how women from two generations came to understand what their experience might be. The third 'Birth in the twilight of certainty,' examines women's experience of Being in a system of birth as constructed, portrayed and sustained in the stories being shared. CONCLUSIONS: The women pregnant in 2012 framed their expectations in the language of choice, whilst the women who birthed in the 1970s-1980s framed their experience in the language of safety. For both, however, the world of birth was the same; saturated with, and only legitimised by the birth of a healthy baby. Rather than creating meaningful understanding, the 'idle talk' of birth made both cohorts fearful of leaving the relative comfort of the 'system', and of claiming an alternative birth

Optimal outcomes and women's positive pregnancy experience: a comparison between the World Health Organization guideline and recommendations in European national antenatal care guidelines.

BACKGROUND: The publication of the World Health Organization (WHO) recommendations on antenatal care in 2016 introduced the perspective of women as a necessary component of clinical guidelines in maternity care. WHO highlights the crucial role played by evidence-based recommendations in promoting and supporting normal birth processes and a positive experience of pregnancy. This paper aims to explore and critically appraise recommendations of national antenatal care guidelines across European countries in comparison with the WHO guideline. METHODS: We collected guidelines from country partners of the EU COST Action IS1405. Components of the documents structure and main recommendations within and between them were compared and contrasted with the WHO guideline on antenatal care with a particular interest in exploring whether and how women's experience was included in the recommendations. RESULTS: Eight out of eleven countries had a single national guideline on antenatal care while three countries did not. National guidelines mostly focused on care of healthy women with a straightforward pregnancy. The level of concordance between the national and the WHO recommendations varied along a continuum from almost total concordance to almost total dissonance. Women's views and experiences were accounted for in some guidelines, but mostly not placed at the same level of importance as clinical items. CONCLUSIONS: Findings outline convergences and divergences with the WHO recommendations. They highlight the need for considering women's views more in the development of evidence-based recommendations and in practice for positive impacts on perinatal health at a global level, and on the experiences of each family

Maternity service reconfigurations for intrapartum and postnatal midwifery staffing shortages: modelling of low-risk births in England

Introduction Choice of birth setting is important and it is valuable to know how reconfiguring available settings may affect midwifery staffing needs. COVID-19-related health system pressures have meant restriction of community births. We aimed to model the potential of service reconfigurations to offset midwifery staffing shortages. Methods We adapted the Birthrate Plus method to develop a tool that models the effects on intrapartum and postnatal midwifery staffing requirements of changing service configurations for low-risk births. We tested our tool on two hypothetical model trusts with different baseline configurations of hospital and community low-risk birth services, representing those most common in England, and applied it to scenarios with midwifery staffing shortages of 15%, 25% and 35%. In scenarios with midwifery staffing shortages above 15%, we modelled restricting community births in line with professional guidance on COVID-19 service reconfiguration. For shortages of 15%, we modelled expanding community births per the target of the Maternity Transformation programme. Results Expanding community births with 15% shortages required 0.0 and 0.1 whole-time equivalent more midwives in our respective trusts compared with baseline, representing 0% and 0.1% of overall staffing requirements net of shortages. Restricting home births with 25% shortages reduced midwifery staffing need by 0.1 midwives (–0.1% of staffing) and 0.3 midwives (–0.3%). Suspending community births with 35% shortages meant changes of –0.3 midwives (–0.3%) and –0.5 midwives (–0.5%) in the two trusts. Sensitivity analysis showed that our results were robust even under extreme assumptions. Conclusion Our model found that reconfiguring maternity services in response to shortages has a negligible effect on intrapartum and postnatal midwifery staffing needs. Given this, with lower degrees of shortage, managers can consider increasing community birth options where there is demand. In situations of severe shortage, reconfiguration cannot recoup the shortage and managers must decide how to modify service arrangements