Supporting multiple birth families: Perceptions and experiences of health visitors.

OBJECTIVE: To explore the current practice and perceptions of health visitors in supporting multiple birth families. DESIGN AND SAMPLE: Practicing health visitors across the United Kingdom were invited to complete a cross-sectional, descriptive, online survey. The questionnaire covered multiple birth caseload, education received about multiples and the experience of working with families. Two-hundred and ninety health visitors completed the questionnaire. Descriptive and inferential statistics were used for analysis of the quantitative components and thematic analysis for the qualitative data. RESULTS: Most health visitors had twins on their current workload. Most health visitors had not received any specific training or continuing professional development regarding the needs of multiple birth families. Supporting the families within the confines of reduced time and increased workload was challenging. Daily tasks of caring for multiples were the main areas that health visitors and parents wanted more information about. CONCLUSIONS: In the United Kingdom, health visitors are uniquely positioned to support multiple birth families, in particular during the more challenging early years. However, the findings of this study suggest that many health visitors are aware that the care and support that they are able to provide multiple birth families falls short of meeting their needs.

Conducting Clinical Trials in Twin Populations: A Review of Design, Analysis, Recruitment and Ethical Issues for Twin-Only Trials.

Although twins often participate in medical research, few clinical trials are conducted entirely in twin populations. The purpose of this review is to demonstrate the substantial benefits and address the key challenges of conducting clinical trials in twin populations, or 'twin-only trials'. We consider the unique design, analysis, recruitment and ethical issues that arise in such trials. In particular, we describe the different approaches available for randomizing twin pairs, highlight the similarity or correlation that exists between outcomes of twins, and discuss the impact of this correlation on sample size calculations and statistical analysis methods for estimating treatment effects. We also consider the role of both monozygotic and dizygotic twins for studying variation in outcomes, the factors that may affect recruitment of twins, and the ethics of conducting trials entirely in twin populations. The advantages and disadvantages of conducting twin-only trials are also discussed. Finally, we recommend that twin-only trials should be considered more often.

First-Time Mothers' Expectations and Experiences of Postnatal Care in England.

Postnatal care is the aspect of maternity care with which women in England are least satisfied. Little is known about first-time mothers' expectations of postnatal care, or how these expectations relate to their experiences and appraisal of care. Thirty-two first-time mothers took part in a longitudinal qualitative descriptive study, based on two semi-structured interviews-the first in pregnancy, and the second 2 to 3 months after birth. Trajectory analysis was used to identify the thematic patterns in the relationships between postnatal care expectations, needs, experiences, and confidence. Five trajectories were identified, showing that mothers' satisfaction with postnatal care and confidence were primarily influenced not by the extent to which their expectations were met but the varied extent to which their individual postnatal needs were met. Rapid and responsive assessment of needs both antenatally and postnatally, and appropriate adjustment of care, is key in supporting women effectively at this time.

Pregnant women's experiences and perceptions of participating in the EVERREST prospective study; a qualitative study.

BACKGROUND: The EVERREST Prospective Study is a multicentre observational cohort study of pregnancies affected by severe early-onset fetal growth restriction. The study recruits women with singleton pregnancies where the estimated fetal weight is less than the 3rd centile and below 600 g, between 20 + 0 and 26 + 6 weeks of pregnancy, in the absence of a known chromosomal, structural or infective cause. METHOD: The reported study was retrospective descriptive qualitative interview study of women who had participated in the EVERREST Prospective Study. The aim of this study was to explore the experiences and perceptions of pregnant women taking part in research during a pregnancy affected by severe early-onset fetal growth restriction. Audio-recorded semi-structured telephone interviews were conducted with a purposive sample of 12 women, at least 1 year after delivery of their baby. Two of these pregnancies had ended in stillbirth and one in neonatal death, reflecting the outcomes seen in the EVERREST Prospective Study. Participants gave informed consent, were 16 years or older and were interviewed in English. A topic guide was used to ensure a consistent approach. Questions focused on pregnancy experiences, involvement with the EVERREST study and potential involvement in future research. Recordings were transcribed verbatim for thematic analysis using NVivo10. RESULTS: Four broad themes were identified; 'before joining the EVERREST Prospective Study', 'participating in research', 'information and support' and 'looking back and looking forwards'. Each broad theme incorporated several subthemes. All participants recalled their reaction to being told their baby was smaller than expected. The way this news was given had a lasting impact. A range of benefits of participation in the EVERREST Prospective Study were described and the participants were positive about the way it was conducted. As a consequence, they were receptive to participating in future research. However, the findings suggest that research teams should be sensitive when approaching families at a difficult time or when they are already participating in other research. CONCLUSIONS: This study highlights the willingness of pregnant women to participate in research and identifies strategies for researchers to engage participants.

Exploratory study on meeting the health social care needs of mothers with twins.

Parents of twins face many challenges and difficulties. These can include: the impact of a multiple birth on family life; the impact of preterm birth; coping and adapting to parenthood, particularly during the first year; managing the mismatch between support needed and support received; and the impact of all these factors on the health and wellbeing of themselves, their children and their wider family. The aim of this phenomenological study was to gain insight into parents' experiences and to inform service provision. Seven semistructured, audio-recorded interviews were conducted with mothers in their own home. The interviews were transcribed verbatim and analysed using qualitative methods. Five key themes were identified: Assumptions vs reality; Worries and concerns; Impact on self; Impact on others; and Sources of support. These themes provide insight into the challenges and difficulties encountered by mothers of twins. For most families, the care and support they received during this time was community based and the findings highlighted a need for healthcare professionals to be better informed about the advice and support needed by these families.

Parents' experiences of information and communication in the neonatal unit about brain imaging and neurological prognosis: a qualitative study.

AIM: To explore parental information and communication needs during their baby's care in the neonatal unit with a focus on brain imaging and neurological prognosis. METHODS: Eighteen parents recruited from one neonatal unit in the United Kingdom participated in semi-structured qualitative interviews using a grounded theory approach. The topic guide focused on information received about neonatal brain imaging, diagnosis and prognosis, emotional impact and support. RESULTS: Parents expressed different information needs influenced by their history, expectations, coping strategies and experiences. Most felt they initially were passive recipients of information and attempted to gain control of the information flow. Nurses were the main providers of information; doctors and other parents were also valuable. Attending ward rounds was important. Some parents felt accessing specific information such as the results of brain imaging could be difficult. Concerns about long-term developmental outcomes and the need for information did not diminish over time. The emotional impact of having a preterm baby had a negative effect on parents' ability to retain information, and all had an ongoing need for reassurance. CONCLUSION: The findings provide insights about the needs and experiences of parents who have a continuing requirement for information about their infant's care, development and prognosis.

A qualitative study of first time mothers' experiences of postnatal social support from health professionals in England.

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.

"Reassurance that you're doing okay, or guidance if you're not": A qualitative descriptive study of pregnant first time mothers' expectations and information needs about postnatal care in England.

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.

Women's ideal and real expectations of postnatal care during their first pregnancy: An online survey in England.

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.

Effect of MRI on preterm infants and their families: a randomised trial with nested diagnostic and economic evaluation.

BACKGROUND: We tested the hypothesis that routine MRI would improve the care and well-being of preterm infants and their families. DESIGN: Parallel-group randomised trial (1.1 allocation; intention-to-treat) with nested diagnostic and cost evaluations (EudraCT 2009-011602-42). SETTING: Participants from 14 London hospitals, imaged at a single centre. PATIENTS: 511 infants born before 33 weeks gestation underwent both MRI and ultrasound around term. 255 were randomly allocated (siblings together) to receive only MRI results and 255 only ultrasound from a paediatrician unaware of unallocated results; one withdrew before allocation. MAIN OUTCOME MEASURES: Maternal anxiety, measured by the State-Trait Anxiety inventory (STAI) assessed in 206/214 mothers receiving MRI and 217/220 receiving ultrasound. Secondary outcomes included: prediction of neurodevelopment, health-related costs and quality of life. RESULTS: After MRI, STAI fell from 36.81 (95% CI 35.18 to 38.44) to 32.77 (95% CI 31.54 to 34.01), 31.87 (95% CI 30.63 to 33.12) and 31.82 (95% CI 30.65 to 33.00) at 14 days, 12 and 20 months, respectively. STAI fell less after ultrasound: from 37.59 (95% CI 36.00 to 39.18) to 33.97 (95% CI 32.78 to 35.17), 33.43 (95% CI 32.22 to 34.63) and 33.63 (95% CI 32.49 to 34.77), p=0.02. There were no differences in health-related quality of life. MRI predicted moderate or severe functional motor impairment at 20 months slightly better than ultrasound (area under the receiver operator characteristic curve (CI) 0.74; 0.66 to 0.83 vs 0.64; 0.56 to 0.72, p=0.01) but cost £315 (CI £295-£336) more per infant. CONCLUSIONS: MRI increased costs and provided only modest benefits. TRIAL REGISTRATION: ClinicalTrials.gov NCT01049594 https://clinicaltrials.gov/ct2/show/NCT01049594. EudraCT: EudraCT: 2009-011602-42 (https://www.clinicaltrialsregister.eu/).

'We knew it was a totally at random thing': parents' experiences of being part of a neonatal trial.

BACKGROUND: Studies exploring parents' trial experiences generally relate to their understanding of the consent process and the development of researcher strategies to facilitate recruitment and retention. The aim was to better understand parents' experience of being part of a trial at the time and their perceptions of trial participation in retrospect. METHODS: Data were collected in a number of ways: from recorded discussions between parents and clinicians about the MRI or ultrasound, in open-text responses to questionnaires and in qualitative interviews at 1 and 2 years after participation. Thematic analysis was undertaken using NVivo10. RESULTS: Key themes identified were 'deciding to take part', with subthemes associated with 'benefitting self', 'benefitting others' and 'being prepared'; 'the randomisation process' with subthemes relating to 'acceptance' and 'understanding' and 'actual engagement' with subthemes of 'practicalities' and 'care from responsive staff'. CONCLUSION: Parents' perspectives on the trial and the processes and information received reflect their understanding and experience of the trial and the value of parent-friendly information-giving about participation, randomisation and follow-up. The practical and logistical points raised confirm the key issues and parents' need for sensitive care and support in the course of a trial. Looking back, almost all parents were positive about their experience and felt that the family had benefitted from participation in the trial and follow-up studies, even when the developmental outcomes were poor. TRIAL REGISTRATION: ClinicalTrials.gov, ID: NCT01049594. https://clinicaltrials.gov/ct2/show/NCT01049594 . Registered on 13 January 2010. EudraCT: EudraCT: 2009-011602-42. https://www.clinicaltrialsregister.eu/ .

The impact of a father's presence during newborn resuscitation: a qualitative interview study with healthcare professionals.

OBJECTIVE: To explore healthcare professionals' experiences around the time of newborn resuscitation in the delivery room, when the baby's father was present. DESIGN: A qualitative descriptive, retrospective design using the critical incident approach. Tape-recorded semistructured interviews were undertaken with healthcare professionals involved in newborn resuscitation. Participants recalled resuscitation events when the baby's father was present. They described what happened and how those present, including the father, responded. They also reflected upon the impact of the resuscitation and the father's presence on themselves. Participant responses were analysed using thematic analysis. SETTING: A large teaching hospital in the UK. PARTICIPANTS: Purposive sampling was utilised. It was anticipated that 35-40 participants would be recruited. Forty-nine potential participants were invited to take part. The final sample consisted of 37 participants including midwives, obstetricians, anaesthetists, neonatal nurse practitioners, neonatal nurses and paediatricians. RESULTS: Four themes were identified: 'whose role?' 'saying and doing' 'teamwork' and 'impact on me'. While no-one was delegated to support the father during the resuscitation, midwives and anaesthetists most commonly took on this role. Participants felt the midwife was the most appropriate person to support fathers. All healthcare professional groups said they often did not know what to say to fathers during prolonged resuscitation. Teamwork was felt to be of benefit to all concerned, including the father. Some paediatricians described their discomfort when fathers came to the resuscitaire. None of the participants had received education and training specifically on supporting fathers during newborn resuscitation. CONCLUSIONS: This is the first known study to specifically explore the experiences of healthcare professionals of the father's presence during newborn resuscitation. The findings suggest the need for more focused training about supporting fathers. There is also scope for service providers to consider ways in which fathers can be supported more readily during newborn resuscitation.

Being there: a qualitative interview study with fathers present during the resuscitation of their baby at delivery.

OBJECTIVE: To explore fathers' experiences of the resuscitation of their baby at delivery. DESIGN: A descriptive, retrospective design using tape-recorded semistructured interviews with fathers present during the resuscitation of their baby at delivery. Fathers described what happened, their interactions with healthcare professionals, their feelings at the time and afterwards. SETTING: Participants were recruited from a large teaching hospital in the UK. PARTICIPANTS: A purposive sample of 20 fathers whose baby required resuscitation at delivery. RESULTS: Participant responses were analysed using thematic analysis. Four broad themes were identified: 'preparation', 'knowing what happened', 'his response' and 'impact on him'. Fathers had no difficulty recalling their emotions during the resuscitation. These feelings remained vivid and were mostly negative. Most fathers wanted to go to their baby during the resuscitation but did not do so. They felt they should stay with their partner, did not want to impede the resuscitation or felt they were not 'allowed' to go to their baby. The fathers' position in the room and the extent to which they were focusing on their partner had an impact on their recollection of what happened. Fathers had no opportunity to discuss the resuscitation with healthcare professionals afterwards. Several fathers felt they had not yet recovered from the experience and a few had symptoms synonymous with post-traumatic stress disorder. CONCLUSION: This is the first study to specifically explore fathers' experiences of newborn resuscitation. The findings should inform healthcare education, policy development and the provision of support to fathers.