ObjectiveTo identify outcomes that are important to families, to inform the development of a core outcome set for stillbirth care research.DesignQualitative interview study.SettingA national study in the United Kingdom.PopulationA diverse sample of parents with a personal history of stillbirth were interviewed.MethodsData collection, coding and analysis were influenced by a modified Grounded Theory approach. Parents' lived experiences of stillbirth were translated into outcomes for the purpose of developing a core outcome set.ResultsForty parents and family members were interviewed. Analysis identified 349 potential care outcomes, 303 (87%) of which have not been previously reported by stillbirth care studies. Outcomes were organised into four major care outcome themes: 1) Clinical 2) Mental health and wellbeing 3) Social and family 4) Future pregnancy and children. Short- and long-term outcomes related to the labour, birth, investigations to understand why a baby had died, stillbirth in a multiple pregnancy, postpartum, psychological and subsequent pregnancy care were reported. Outcomes infrequently measured in previous stillbirth care research yet discussed by most participants were social isolation, impact on occupation and need for mental health support. Parents spoke of the importance of counselling to help them understand their grief, however, the provision of this service was reported to be varied throughout the UK.ConclusionA comprehensive outcome inventory has now been constructed, from which the final core outcome set will be determined. Future care should be developed and evaluated using outcomes that directly relate to the lived experiences of parents and families exposed to stillbirth.

Introduction Neonatal death exerts long-lasting impact on parents’ mental health, finances and relationships, and the wider family. There is national and international momentum to evaluate interventions to support parents after the death of a baby. Core Outcome Sets (COSs) provide a minimum set of outcomes, agreed by stakeholders to be important, which should be evaluated in all studies to support evidence syntheses and identification of the most effective interventions. We aim to develop a COS for assessing interventions and care after neonatal death in high-income countries, to support future evidence syntheses and enable the identification of effective interventions and care for parents.Methods and analysis We will develop the COS in six phases. A parent involvement group and stakeholder steering committee have been established and have informed each planned phase: (1) systematic review of quantitative studies evaluating care and interventions provided after neonatal death, to describe interventions, outcomes and outcome measurement tools used to assess intervention effectiveness; (2) qualitative interviews with parents who have experienced neonatal death to identify outcomes important and relevant to them; (3) think-aloud interviews with stakeholders (bereaved parents, healthcare professionals and other stakeholders) to develop and refine an online survey; (4) real-time online international Delphi survey with bereaved parents, healthcare professionals and other stakeholders to shortlist outcomes for consideration in the COS; (5) adapted nominal group online consensus meetings with parents, healthcare professionals and other stakeholders to agree final COS and (6) identification of a preliminary set of measurement tools.Ethics and dissemination Ethical approval has been granted for all activities to be undertaken by the University of Bristol Health Sciences Faculty Research Ethics Committee (reference: 15121). We will disseminate the findings via peer-reviewed publications and relevant academic and professional conferences.PROSPERO registration number CRD42020151365.

OBJECTIVE:To develop a core outcome set for stillbirth care. DESIGN:Consensus development study. SETTING:International. POPULATION:542 participants from 29 countries, including 381 parents or family members who have experienced stillbirth, 192 care professionals and researchers (31 of which identified as both parent and professional). 95.6% of parents and 86.5% of professional stakeholders were from in high-income countries. METHODS:Modified Delphi method and consensus meetings. RESULTS:Stakeholders agreed upon 8 core outcomes to measure in all stillbirth care studies; an additional 11 outcomes for specific interventions or care were also decided. Core outcomes for all stillbirth care studies were life-threatening complications and maternal death, parents' experience of respectful and supportive care, grief, mental health and emotional wellbeing, isolation, stigma, impact on work, impact on relationship with immediate family. Outcomes for studies assessing interventions to understand the cause of stillbirth (investigations): cause of death identified and parents' understanding of the cause of death. Outcomes in studies assessing subsequent pregnancy after stillbirth: antenatal complications for mother, antenatal complications for baby, survival of baby, neonatal outcomes and attachment to baby. Outcomes for when a stillbirth occurs in a multiple pregnancy: survival of other baby/ies, preterm birth, pregnancy complications for baby/ies and neonatal outcomes. CONCLUSION:This core outcome set for stillbirth care can be used in future trials and systematic reviews to minimise outcome-reporting bias, allow comparability of interventions in meta-analyses and ultimately reduce research wastage.

The Neonatal Behavioural Assessment Scale (NBAS) is used in the first days and months of life, for caregivers, researchers and clinicians to better understand neonatal behaviour and neurological functioning. Insights into the validity and effectiveness of the NBAS as an early predictive tool of later infant developmental outcomes are currently lacking. This systematic review conducted a search of four research databases, with no restrictions on publication timeframe or developmental outcome domain, identifying 41 papers. Included studies utilized the NBAS within the first months of life and a later measure of development. The NBAS was most commonly administered within the first three days of life with most infant outcomes examined within the first postnatal year, although some extended into childhood and adolescence. Many studies were limited by small sample size and large numbers of modelled variables. However, despite high heterogeneity of included studies some common themes emerged. NBAS social interaction, motor, and irritability clusters were most often associated with later infant and child outcomes, with associations especially robust in early life, particularly in relation to socioemotional outcome domains. For cognitive outcomes, NBAS motor items were more frequently identified predictors. The longevity of NBAS state-regulation associations was also striking, particularly with mental health and neurodevelopmental conditions in late childhood and adolescence. Nevertheless, there is a need for more robust, comprehensive research into the predictive uses of the NBAS. In particular, research that makes use of a shared, central repository and that considers more vulnerable groups would vastly benefit the field.

Introduction: Neonatal death exerts long lasting impact on parents’ mental health, finances and relationships, and the wider family. There is national and international momentum to evaluate interventions to support parents after the death of a baby. Core Outcome Sets provide a minimum set of outcomes, agreed by stakeholders to be important, that should be evaluated in all studies to support evidence syntheses and identification of the most effective interventions. Aim: We aim to develop a Core Outcome Set (COS) for assessing interventions and care after neonatal death, to support future evidence syntheses and enable identification of effective interventions and care for parents. Methods and analysis: We will develop the COS in 6 phases. A parent involvement group and stakeholder steering committee have been established and have informed each planned phase: 1) Systematic review of quantitative studies evaluating care and interventions provided after neonatal death, to describe interventions, outcomes, and outcome measurement tools used to assess intervention effectiveness; 2) Qualitative interviews with parents who have experienced neonatal death to identify outcomes important and relevant to them; 3) Think-Aloud interviews with stakeholders (bereaved parents and professionals) to develop and refine an online survey; 4) Real-Time online international Delphi survey with bereaved parents and professionals to shortlist outcomes for consideration in the COS; 5) Adapted nominal group online consensus meetings with parents and professionals to agree final COS; 6) Identification of a preliminary set of measurement tools. Ethics and dissemination: Ethical approval has been granted for all activities to be undertaken by the University of Bristol Health Sciences Faculty Research Ethics Committee (reference: 15121). We will disseminate the findings via peer-reviewed publications and relevant academic and professional conferences. Registration: This COS has been registered on the COMET database.(1) The systematic review has been registered on the PROSPERO database (CRD42020151365)

In recent times, papers published in the journal have concerned the experience, needs and wellbeing of parents, most often mothers. Less often are infant behaviour and outcomes in focus. This is most true in relation to the newborn and their contribution to the developing relationship. Often constructed as less able, immature creatures, newborns are really effectively adapted individuals, good at communicating their needs. The transition to parenthood involves at least two actors: babies and their parents as mothers, fathers, and couples. Becoming a parent is life-changing and infants have an active role, with early behaviour and learning as critical elements. The importance of how newborns behave at birth and during their early weeks was long ago recognised by Dr Berry Brazelton, an American paediatrician and researcher. The Newborn Behavioural Assessment Scale (NBAS; Brazelton, 1973) was developed as a comprehensive neurobehavioral assessment, focusing on visual and auditory responses, habituation abilities, state control, alertness, tone and motor activity, thus providing considerable detail about individual babies for clinical and research purposes. Used with term babies up to about 2 months of age and those developmentally delayed, it is sufficiently sensitive to identify differences between groups as a baseline or outcome measure in comparisons following, for example, prenatal exposure to toxic substances, preterm birth or different types of care (Brazelton & Nugent, 2011). Others have used it as a point of comparison, looking for continuities and links at later stages of development. Essentially, the NBAS documents individual differences, indicating what a baby brings to the dynamic and developing relationship. First face-to-face encounters with your baby are unique events that parents remember and value enormously. Early contact provides opportunities to start relationship-building, though for many couples emotional attachment begins before birth. Just over half of recent mothers first felt ‘that their baby really belonged to them’ during pregnancy and a further fifth immediately after birth (Henderson et al., 2016). Attachment does not happen in the same way or at the same point, particularly in more complex situations when mothers or babies are unwell. What happens during the transition to parenthood? To psychologists, researchers and professionals working in healthcare, there are many psychosocial processes at work: changes in identity, self as parent, as ‘mother’, ‘father’; building and accepting a different self-image; developing self-efficacy and agency in this new role; maintaining well-being at a time of marked change; and connecting with social groups within and across generations. For health professionals, a key question is ‘How should we work with and support parents in this transition?’ Pregnancy, childbirth and the early weeks with a new baby are a life stage that is a recognised window of opportunity for intervention. In working in this area, Berry Brazelton and Kevin Nugent have always argued that sharing a new baby with parents JOURNAL OF REPRODUCTIVE AND INFANT PSYCHOLOGY 2022, VOL. 40, NO. 6, 547–549 https://doi.org/10.1080/02646838.2022.2131713

Introduction Stillbirth is associated with significant physical, psychosocial and economic consequences for parents, families, wider society and the healthcare system. There is emerging momentum to design and evaluate interventions for care after stillbirth and in subsequent pregnancies. However, there is insufficient evidence to inform clinical practice compounded by inconsistent outcome reporting in research studies. To address this paucity of evidence, we plan to develop a core outcome set for stillbirth care research, through an international consensus process with key stakeholders including parents, healthcare professionals and researchers. Methods and analysis The development of this core outcome set will be divided into five distinct phases: (1) Identifying potential outcomes from a mixed-methods systematic review and analysis of interviews with parents who have experienced stillbirth; (2) Creating a comprehensive outcome long-list and piloting of a Delphi questionnaire using think-aloud interviews; (3) Choosing the most important outcomes by conducting an international two-round Delphi survey including high-income, middle-income and low-income countries; (4) Deciding the core outcome set by consensus meetings with key stakeholders and (5) Dissemination and promotion of the core outcome set. A parent and public involvement panel and international steering committee has been convened to coproduce every stage of the development of this core outcome set. Ethics and dissemination Ethical approval for the qualitative interviews has been approved by Berkshire Ethics Committee REC Reference 12/SC/0495. Ethical approval for the think-aloud interviews, Delphi survey and consensus meetings has been awarded from the University of Bristol Faculty of Health Sciences Research Ethics Committee (Reference number: 116535). The dissemination strategy is being developed with the parent and public involvement panel and steering committee. Results will be published in peer-reviewed specialty journals, shared at national and international conferences and promoted through parent organisations and charities. PROSPERO registration number CRD42018087748.

Identifying women with perinatal anxiety is important in order to provide timely support and prevent adverse outcomes. Self-report instruments are commonly used in maternity settings. An alternative is to ask women directly whether they self-identify as having anxiety. We examine the agreement between self-reported and self-identified anxiety at 3 months postpartum and compare the characteristics of women with self-reported and self-identified anxiety. A secondary analysis of national maternity surveys conducted in 2014 in England and Northern Ireland was conducted. Self-reported anxiety was assessed using the Edinburgh Postnatal Depression Scale anxiety subscale (EPDS-3A). Agreement between self-reported and self-identified anxiety was measured using Cohen’s kappa. Logistic regression was used to identify characteristics of women in each group. In our sample of 6752 women, 14.2% had self-reported anxiety, 5.9% had self-identified anxiety and 3.5% were positive on both measures. Among those with self-identified anxiety, 58.1% also had self-reported anxiety. Of those with self-reported anxiety, 24.4% also had self-identified anxiety. Statistical agreement between the two measures was minimal with Cohen’s kappa 0.283 at an EPDS-3A threshold of ≥6. Among both self-identified and self-reported anxiety groups, psychological factors were the strongest associated factors. Women with self-reported anxiety had higher odds of being from Northern Ireland (OR 1.81); having a mixed or unhappy reaction to the pregnancy (OR 1.65); living without a partner (aOR 1.37); and antenatal depression (aOR 1.32). Women with self-identified anxiety had higher odds of physical problems (OR 1.84); and being of Black or minority ethnicity (OR 0.39). Asking postnatal women directly whether they self-identify as having anxiety identifies a different group of women from those who score highly on self-report measures. Women with self-identified anxiety may benefit from further follow-up and support.

Childhood temperament is an early characteristic shaping later life adjustment. However, little is currently known about the stability of early temperament and its susceptibility to the environment in children born very preterm (VPT; <33 weeks’ gestation). Here, we investigated infant-to-childhood temperamental trajectories, and their interaction with parental practices, in VPT children. Maternal reports of infant temperament were collected in 190 infants (mean age: 11.27 months; range 9–18 months) enrolled in the longitudinal Evaluation of Preterm Imaging (ePrime; Eudra: CT 2009-011602-42) study, using the ePrime questionnaire on infant temperament. At 4–7 years of age, further assessments of child temperament (Children’s Behavior Questionnaire—Very Short Form) and parenting style (Arnold’s Parenting Scale) were conducted. Results showed that more difficult temperament in infancy was associated with increased Negative Affectivity in childhood, regardless of parenting practices. This lends support to the stability of early temperamental traits reflecting negative emotionality. In contrast, a lax parenting style moderated the relationship between easy infant temperament and Negative Affectivity at 4–7 years, such that an easier infant temperament was increasingly associated with higher childhood Negative Affectivity scores as parental laxness increased. These results highlight a potential vulnerability of VPT infants considered by their mothers to be easy to handle, as they may be more susceptible to the effects of suboptimal parenting in childhood.

Aims To explore the perceptions and experience of women whose baby died in the neonatal period about their care in the perinatal period, on delivery suite, in the neonatal unit and afterwards, expressed in their own words. Design Secondary analysis of the Listening to Parents study, using thematic analysis based on the open text responses from a postal survey of parents whose baby died in the neonatal period in England. Women were asked about care during the pregnancy, labour and birth, around the time the baby died and about neonatal care. Women whose pregnancy was terminated for fetal abnormality were excluded from this analysis. Results Completed questionnaires were received from 249 mothers of whom most (78%) responded with open text. Overarching themes identified were 'the importance of proximity', 'recognition of role and identity as a parent' and 'the experience of care' and subthemes included 'hours and moments', 'barriers to contact', ' being able to parent, even for a short time', 'missed opportunities', 'being heard' and 'sensitive and responsive care'. Conclusion The findings identify what is most important for mothers in experiencing the life and death of a baby as a newborn. Physical contact with the baby was paramount, as was being treated as a mother and a parent and being able to function as such. The way in which healthcare staff behaved and how their babies were cared for was critical to how mothers felt supported and enabled at this time. If all women whose babies die in the neonatal period after birth are to receive the responsive care they need, greater understanding of the primary need for closeness and proximity, for active recognition of their parental role and staff awareness of the limited time window available is essential.

Problem: Many women experience the transition to motherhood as stressful and find it challenging to cope, contributing to poor emotional wellbeing. Background: Postnatal social support from health professionals can support new mothers in coping with this transition, but their social support role during the postnatal period is poorly defined. Aim: To explore how first time mothers in England experienced social support from health professionals involved in their postnatal care. Methods: A qualitative descriptive study, theoretically informed by phenomenological social psychology, based on semi-structured, in-depth interviews with 32 mothers from diverse backgrounds. These were analysed using inductive thematic analysis, with themes subsequently mapped on to the four dimensional model of social support (emotional, appraisal, informational, practical). Findings: There were nine themes connected to social support, with the strongest mapping to appraisal and informational support: for appraisal support, 'Praise and validation', 'Criticism and undermining', and 'Made to feel powerless'; for informational support, 'Is this normal?', 'Need for proactive information', and 'Confusion about postnatal care'; for emotional support, 'Treated as an individual and heard' and 'Impersonal care and being ignored'; for practical support, 'Enabling partners to provide practical support'. Conclusions: Health professionals can play an important role postnatally in helping first time mothers to cope, develop confidence and to thrive, by taking every opportunity to give appropriate and personalised appraisal, informational and emotional social support alongside clinical care. Training and professional leadership may help to ensure that all health professionals are able and expected to offer the positive social support already offered by some. (c) 2020 The Authors. Published by Elsevier Ltd on behalf of Australian College of Midwives. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).

"Our origins: causal pathways and links across time." Journal of Reproductive and Infant Psychology, 39(4), pp. 452–453

Objectives. This study describes the development and validation the Menstrual Practice Needs Scale (MPNS-36) which measures the extent to which females’ menstrual practices and environments meet their needs. Methods. A 54-item pool was developed following systematic-review of qualitative and quantitative studies and expert feedback. Item reduction and scale validation were undertaken using a cross-sectional survey of 538 menstruating schoolgirls in Soroti, Uganda. Test-retest reliability was assessed in a sub-sample of 52 girls two weeks after the first administration. Construct validity was tested through relationships with hypothesised correlates: confidence to manage menses, self-reported school absenteeism, and mental health symptoms. Results. The final MPNS-36 comprises 28 items applicable to all respondents, and 8 items capturing washing and drying experiences for those reusing menstrual materials. A four-factor solution for the core 28 items was the best fit for the data (RMSEA=0.028-0.029; CFI=0.961-0.964; TFI=0.957-0.959), supplemented by two factors for reuse (RMSEA=0.021-0.030; CFI=0.987-0.994; TFI=0.981-0.991). Subscale and total scores were calculated as mean scores to support accessibility for practitioners. Subscales were ‘material and home environment needs’ (11 items, α-ordinal=0.84), ‘transport and school environment needs’ (5-items, α-ordinal=0.73), ‘material reliability concerns’ (3-items, α-ordinal=0.55), ‘change and disposal insecurity’ (9-items, α-ordinal=0.80), ‘reuse needs’ (5-items, α-ordinal=0.76), and ‘reuse insecurity’ (3-items, α-ordinal=0.56). Relationships between subscales and hypothesised correlates supported validity. Home- and school-based items were more strongly associated with confidence to manage menstruation at home and school, respectively. Higher scores predicted not missing school during the last menstrual period (total score: OR=2.62, 95%CI=1.52-4.50). Test-retest reliability was moderate (total score: ICC(2,1)=0.69).Conclusions. The MPNS-36 demonstrated acceptable reliability and validity. It is the first measure to capture women and girls perceived menstrual hygiene and may be used across a range of study designs to assess menstrual needs. Future research should explore the suitability and sensitivity of the measure across contexts.

OBJECTIVE:To explore what first time mothers in England expect from postnatal care while they are pregnant, what they would ideally like, where they get their information on postnatal care, and their views on the sufficiency of this information. DESIGN:A qualitative descriptive interview-based study. SETTING:England PARTICIPANTS: A maximum variation sample of 40 women who were currently in the third trimester of pregnancy; aged 16 or over; planning to give birth in England and had not given birth previously. METHODS:Semi structured interviews were carried out between October 2017 and March 2018, by telephone (n = 32) and face to face (n = 8). Interviews were analysed using thematic analysis. RESULTS:There were six themes and twelve subthemes. The themes were: (1) 'Piecing together snippets of information' containing subthemes 'Incomplete official sources' and 'Other mothers' stories'; (2) 'Planning ahead or going with the flow' containing subthemes 'Wanting more information' and 'Postnatal care not a priority'; (3) 'Judgement or reassurance' containing subthemes 'Real: Being judged', 'Ideal: Reassurance and non-judgmental advice'; (4) 'Focus of care' containing subthemes 'Real: A focus on checks and feeding', 'Ideal: More focus on mother's wellbeing'; (5) 'A system under pressure' containing subthemes 'Real: Busy midwives, reactive care', 'Ideal: Reliable, proactive information'; (6) 'Deciding about discharge', containing subthemes 'Real: Confusion about decision-making', 'Ideal: More control over length of hospital stay'. KEY CONCLUSIONS:First time mothers' experience of the transition to parenthood could be improved by antenatal access to comprehensive information about the timing, location, content and purpose of postnatal care. Information should take a woman-centred perspective and cover all settings (hospitals, birth centres, home, community), including the roles and responsibilities of all the professionals who may be involved. IMPLICATIONS FOR PRACTICE:Clear and comprehensive information about postnatal care should be provided to all women in ways that are accessible at any stage of pregnancy or the postnatal period. As women pregnant for the first time worry about being judged if they seek professional advice and reassurance postnatally, information about postnatal care should aim to address this.

Background: There are many studies of women's experiences of care during the postnatal period, however little is known about women's expectations of postnatal care. Objective: This study explores first-time pregnant women's expectations, both ideal and real life, of postnatal care in England. Design: a descriptive, cross-sectional online survey design was used . The questionnaire took approximately 10 minutes to complete and was developed specifically for this survey. It included an informed consent section, socio-demographic questions and closed tick-box questions on where they had received information on postnatal care, and real and ideal expectations of postnatal care in hospital/birth centre and at home. Setting: The survey was hosted on the National Perinatal Epidemiology Unit website and advertised through a number of third sector and commercial organisations in 2017. Participants: Women who were pregnant, had not given birth before, were aged 16 years and over, and living in England were eligible to participate. Analysis: Survey data were analysed using descriptive statistics and, where appropriate, chi square test using SPSS Version 23. Data from open ended questions were analysed by two researchers separately then codes and themes were discussed until consensus was reached. Results: 283 women responded to the survey of whom 200 were eligible and included in the analysis. Most had received information on postnatal care from multiple sources, with pregnancy classes and midwives being most common. Most expected to stay one day or less in hospital or birth centre after normal delivery. Real life expectations were lower than ideal expectations, and hospital/birth centre real life expectations were higher than home real life expectations for physical health advice/checks and information/help with feeding. Categories developed from the open text answers were 'Respect, compassion and individualised care at a vulnerable time', 'The ward environment', 'Feeling ready for hospital discharge' and 'Help to find support in the community'. Key conclusions: Women in this survey had high ideal world expectations of their postnatal care but in real life expected more focus on checking on their health and that of their baby and on giving information about the new challenges of how to breastfeed and look after a baby. While women valued checks of their health and that of their baby, ideally they wanted easy access to reassurance that they were feeding and looking after their baby well, that they were 'doing it right', and that what was happening to them was normal. Implications for practice: As well as the necessary checks in the immediate postpartum period, consideration also needs to be given to the best way to meet the informational and support needs of women to optimise their wellbeing and transition to parenthood. A number of resources are used by women that could be enhanced to inform expectations of postnatal care and to provide valuable information to support their postnatal care. (C) 2020 Published by Elsevier Ltd.

Abstract Background The National Perinatal Epidemiology Unit in England has conducted five National Maternity Surveys (NMS) at varying intervals since 1995. This paper aims to describe the changes in NMS response rates over time and to compare the demographic characteristics of respondents to each NMS. Methods This paper is based on secondary data analysis of the NMS (cross-sectional postal surveys) from 1995 to 2018. All women aged 16 years and over who gave birth in England (and Wales in 1995) during specified time periods from 1995 to 2018 were eligible to be selected. For each survey, between 3570 and 16,000 women who were 3–6 months postpartum were selected at random by the Office for National Statistics, using birth registrations. Women could participate on paper, by telephone (from 2006) or online (from 2010). Results The response rate to the NMS decreased from 67% in 1995 to 29% in 2018. The decline was evident across demographic groups. In all NMS, response rates were higher in women who were older (crude prevalence ratios (PR) for 16–24 years versus 30–34 years = 0.51–0.73 (across surveys)), married (crude PR for sole versus married registrants = 0.41–0.62), born in the UK (crude PR for non UK-born versus UK-born = 0.70–0.84), and living in less deprived areas (crude PR for least versus most deprived = 0.42–0.63). However, the association between each demographic characteristic and response varied across surveys, with the youngest women, women who registered the birth of the baby in their sole name, and women living in the most deprived areas becoming relatively less likely to respond over time. In multivariable analysis in 2014 and 2018, the effects of age, marital status, country of birth and level of area deprivation on response were attenuated but all four demographic characteristics remained statistically significantly associated with response. Conclusions Response rates to the NMS have declined significantly during the last 23 years. The demographic characteristics associated with response were consistent across surveys, but the size of the effect varied significantly, with underrepresented groups becoming relatively less likely to participate over time. It is important to find strategies to increase response rates, particularly amongst underrepresented groups, and to validate the data collected.