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Women's experiences of being invited to participate in a case-control study of stillbirth - findings from the Midlands and North of England Stillbirth Study.

ABSTRACT: BACKGROUND:The Midlands and North of England Stillbirth Study (MiNESS) was a case-control study of women who had a stillbirth or who had an ongoing pregnancy. During the set up phase questions were raised about whether interviewing women within six weeks of a stillbirth and recruiting women who were still pregnant into a "stillbirth" study was acceptable. This led to the research questions "whether it is appropriate to ask women who have recently experienced a stillbirth to participate in research?" and "whether it is appropriate to ask pregnant women to participate in a research project looking at factors associated with stillbirth." This nested study aimed to describe the opinions of women approached to participate in MiNESS to explore their views and experiences of a research project focussed on stillbirth. METHODS:Semi- structured interviews were conducted at a single study site involved in MiNESS. Purposive sampling was used to obtain a sample of women who were approached following a stillbirth (case n?=?6) and those who were approached during pregnancy who gave birth to a live born baby (control n?=?6). These two groups of women were divided equally according to whether they participated in the main MiNESS questionnaire study and those who declined to do so (n?=?3 in each group). Interview data were transcribed and analysed using thematic analysis to identify the most important factors in determining whether women participated in MiNESS. RESULTS:The following themes emerged from the analysis: participants' understanding of research; approach by researcher; wanting to help; stillbirth taboo. These themes are explored individually in the manuscript. Participants reported positive views about research and previous participation in research studies. Respondents valued an initial approach from a member of staff already known to them. The taboo around stillbirth was a barrier to participation for some women with ongoing pregnancies. CONCLUSIONS:Experiences and views regarding research differed between participants and non-participants in the MiNESS study. Participants reported a greater understanding of the importance and implications of clinical research. When designing future studies, the timing of approach, clarity of information and the person approaching potential participants should be considered to optimise recruitment. TRIAL REGISTRATION:NCT02025530 date registered: 01/01/2014.

SUBMITTER: Budd J

PROVIDER: S-EPMC6091188 | biostudies-literature | 2018 Aug

REPOSITORIES: biostudies-literature

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Women's experiences of being invited to participate in a case-control study of stillbirth - findings from the Midlands and North of England Stillbirth Study.

Budd Jayne J Stacey Tomasina T Martin Bill B Roberts Devender D Heazell Alexander E P AEP

BMC pregnancy and childbirth 20180806 1

<h4>Background</h4>The Midlands and North of England Stillbirth Study (MiNESS) was a case-control study of women who had a stillbirth or who had an ongoing pregnancy. During the set up phase questions were raised about whether interviewing women within six weeks of a stillbirth and recruiting women who were still pregnant into a "stillbirth" study was acceptable. This led to the research questions "whether it is appropriate to ask women who have recently experienced a stillbirth to participate i ...[more]

PMID: 30081858

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Project description:The United Kingdom has one of the highest rates of stillbirth in Europe, resulting in approximately 4,000 stillbirths every year. Potentially modifiable risk factors for late stillbirths are maternal age, obesity and smoking, but the population attributable risk associated with these risk factors is small.Recently the Auckland Stillbirth Study reported that maternal sleep position was associated with late stillbirth. Women who did not sleep on their left side on the night before the death of the baby had double the risk compared with sleeping on other positions. The population attributable risk was 37%. This novel observation needs to be replicated or refuted.Case control study of late singleton stillbirths without congenital abnormality. Controls are women with an ongoing singleton pregnancy, who are randomly selected from participating maternity units booking list of pregnant women, they are allocated a gestation for interview based on the distribution of gestations of stillbirths from the previous 4 years for the unit. The number of controls selected is proportional to the number of stillbirths that occurred at the hospital over the previous 4 years.Interviewer administered questionnaire and data extracted from medical records.415 cases and 830 controls. This takes into account a 30% non-participation rate, and will detect an OR of 1.5 with a significance level of 0.05 and power of 80% for variables with a prevalence of 57%, such as non-left sleeping position.Mantel-Haenszel odds ratios and unconditional logistic regression to adjust for potential confounders.The hypotheses to be tested here are important, biologically plausible and amenable to a public health intervention. Although this case-control study cannot prove causation, there is a striking parallel with research relating to sudden infant death syndrome, where case-control studies identified prone sleeping position as a major modifiable risk factor. Subsequently mothers were advised to sleep babies prone ("Back to Sleep" campaign), which resulted in a dramatic drop in SIDS. This study will provide robust evidence to help determine whether such a public health intervention should be considered.NCT02025530.

Project description:Minoritised ethnic perinatal women can experience judgemental and stigmatising care due to systemic racism. Discriminatory care contributes to increased risks of poor maternal and infant outcomes, including higher rates of mental ill-health. This study aimed to explore minoritised ethnic women's experiences of maternity services, including maternity care and mental health support, within a North-West England locality. Here we use an equity lens to report the findings that describe if and how women's personal, cultural, and spiritual needs were met, their experiences of discriminatory and prejudicial care, and to identify recommendations for service provision. A mixed-methods study was undertaken comprising an online survey, interviews, and community consultations. Questions explored access to and experiences of antenatal care and education; information, communication, and choice; experiences of (dis)respect and judgement; mental health needs and support; cultural/religious needs and support; and overall experiences of maternity care. Eligibility criteria were: women, 18+ years, from self-reported minoritised ethnic backgrounds, who had given birth in the previous 2 years and received maternity care in the locality. Surveys were available in seven languages and distributed via social media, mother-baby groups, and community locations. English-speaking survey participants were invited to take part in a follow-up interview. Community staff were approached to collect data on behalf of the study team. Quantitative data were analysed descriptively (n, %) and merged with qualitative data into descriptive themes. Overall, 104 women provided data; most self-identified as Asian (65.0%) or Black (10.7%) and were aged between 30-34 (32.0%) or 25-29 years (23.3%). Four descriptive themes are reported: 'accessing care' details variations and barriers in accessing maternity care; 'communication needs, and resources' describes views on adaptions and resources for specific communication needs; 'meeting religious and cultural needs' outlines how various religious and cultural needs were met by maternity providers; 'discriminatory or stigmatising care' reports on experiences of pejorative and inequitable care. An equity lens helped identify areas of discriminatory and inequitable care. Key recommendations include cultural safety training for staff; service-user engagement and co-production of research and resources, and appropriate facilities and recording systems to facilitate individualised, needs-based maternity care.

Project description:OBJECTIVE:To report perception of fetal movements in women who experienced a stillbirth compared with controls at a similar gestation with a live birth. DESIGN:Case-control study. SETTING:41 maternity units in the UK. PARTICIPANTS:Cases were women who had a late stillbirth ?28 weeks gestation (n=291) and controls were women with an ongoing pregnancy at the time of the interview (n=733). Controls were frequency matched to cases by obstetric unit and gestational age. METHODS:Data were collected using an interviewer-administered questionnaire which included questions on maternal perception of fetal movement (frequency, strength, increased and decreased movements and hiccups) in the 2?weeks before the interview/stillbirth. Five fetal movement patterns were identified incorporating the changes in strength and frequency in the last 2?weeks by combining groups of similar pattern and risk. Multivariable analysis adjusted for known confounders. PRIMARY OUTCOME MEASURE:Association of maternally perceived fetal movements in relation to late stillbirth. RESULTS:In multivariable analyses, women who reported increased strength of movements in the last 2?weeks had decreased risk of late stillbirth compared with those whose movements were unchanged (adjusted OR (aOR) 0.18, 95%?CI 0.13 to 0.26). Women with decreased frequency (without increase in strength) of fetal movements were at increased risk (aOR 4.51, 95%?CI 2.38 to 8.55). Daily perception of fetal hiccups was protective (aOR 0.31, 95%?CI 0.17 to 0.56). CONCLUSIONS:Increased strength of fetal movements and fetal hiccups is associated with decreased risk of stillbirth. Alterations in frequency of fetal movements are important in identifying pregnancies at increased risk of stillbirth, with the greatest risk in women noting a reduction in fetal activity. Clinical guidance should be updated to reflect that increase in strength and frequency of fetal movements is associated with the lowest risk of stillbirth, and that decreased fetal movements are associated with stillbirth. TRIAL REGISTRATION NUMBER:NCT02025530.

Project description:Tuberculosis cohort audit (TBCA) was introduced across the North West (NW) of England in 2012 as an ongoing, multidisciplinary, systematic case review process, designed to improve clinical and public health practice. TBCA has not previously been introduced across such a large and socioeconomically diverse area in England, nor has it undergone formal, qualitative evaluation. This study explored health professionals' experiences of the process after 1515 cases had been reviewed.Qualitative study using semistructured interviews. Respondents were purposively sampled from 3 groups involved in the NW TBCA: (1) TB nurse specialists, (2) consultant physicians and (3) public health practitioners. Data from the 26 respondents were triangulated with further interviews with key informants from the TBCA Steering Group and through observation of TBCA meetings.Interview transcripts were analysed thematically using the framework approach.Participants described the evolution of a valuable 'community of practice' where interprofessional exchange of experience and ideas has led to enhanced mutual respect between different roles and a shared sense of purpose. This multidisciplinary, regional approach to TB cohort audit has promoted local and regional team working, exchange of good practices and local initiatives to improve care. There is strong ownership of the process from public health professionals, nurses and clinicians; all groups want it to continue. TBCA is regarded as a tool for quality improvement that improves patient safety.TBCA provides peer support and learning for management of a relatively rare, but important infectious disease through discussion in a no-blame atmosphere. It is seen as an effective quality improvement strategy which enhances TB care, control and patient safety. Continuing success will require increased engagement of consultant physicians and public health practitioners, a secure and ongoing funding stream and establishment of clear reporting mechanisms within the public health system.

Project description:BackgroundAs maternity services evolve and the population of women served also changes, there is a continuing need to effectively document the views of women with recent experience of care. A woman's maternity experience can have a positive or negative effect upon her emotional well-being and health, in the immediate and the long-term, which can also impact the infant and the wider family system. Measuring women's perceptions of maternity services is an important way of monitoring the quality of care provision, as well as providing key indicators to organisations of the services that they are providing. It follows that, without information identifying possible areas in need of improvement, it is not clear what changes should be made to improve the experiences of women during their journey through maternity services from pregnancy to the early weeks at home with a new baby . The objective is to describe the development process and psychometric properties of a measure of women's experience of maternity care covering the three distinctly different phases of maternity - pregnancy, labour and birth, and the early postnatal period.MethodsData from a national survey of women who had recently given birth (n = 504) were used. Exploratory and confirmatory factor analytic methods were employed. The measure was assessed for underlying latent factor structure, as well as for reliability, internal consistency, and validity (predictive, convergent and discriminant).ResultsThe models developed confirmed the use of three separate, but related scales about experience of maternity care during pregnancy, labour and birth and the postnatal period. Data reduction was effective, resulting in a measure with 36 items (12 per scale).ConclusionThe need for a psychometrically robust and qualitatively comprehensive measure of women's experience of maternity care has been addressed in the development and validation of this prototype measure. The whole measure can be used at one time point, or the three separate subscales used as individual measures of experience during particular phases of the maternity journey with identified factor structures in their own right.

Project description:BACKGROUND:Research suggests that collaboratively delivered maternity care can positively impact health outcomes. However, women's perspectives on models of care involving interprofessional collaboration between midwives and health visitors are not well understood. Accounts of women's maternity care experiences are key to improving maternity services. This study considered women's views and experiences of maternity care as collaboratively provided by midwives and health visitors in England. METHODS:A qualitative focus group study with an exercise exploring women's ideal maternity care pathway was conducted. Three focus groups were conducted in London, England between June and August 2017 with women who had had a child within 18?months prior to the study. The participants (n?=?12) were recruited from two Children's Centres in London, England. Data were analysed using thematic analysis. RESULTS:Four themes were identified: 'Women's experiences of maternity care from midwives and health visitors', 'Midwife-health visitor communication', 'Midwife-health visitor collaboration for tailored care', and 'Women's ideal maternity care pathway'. Regarding women's experiences of interprofessional collaboration between midwives and health visitors, this was rarely encountered, but welcomed by women. Women's observations of limited tailored care and co-ordination led to several suggestions to improve maternity care, including secure, shared medical recordkeeping systems, clarity on midwives' and health visitors' roles, as well as increased communication. CONCLUSIONS:Maternity care that is collaboratively delivered by midwives and health visitors, from the perspectives of the women in this study, is not routinely provided. However, women recognise the potential benefits of midwife-health visitor collaboration. Future research should explore service configurations that support integrated maternity care pathways, and evaluate the impact of midwife-health visitor collaboration on health and service outcomes.

Dataset Information

Women's experiences of being invited to participate in a case-control study of stillbirth - findings from the Midlands and North of England Stillbirth Study.

Publications

Women's experiences of being invited to participate in a case-control study of stillbirth - findings from the Midlands and North of England Stillbirth Study.

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