Merryl Harvey

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

To explore parental information and communication needs during their babys care in the neonatal unit with a focus on brain imaging and neurological prognosis.

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/).

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 babys 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 babys 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 fathers 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 fathers 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.

Qualitative study of the clinician–parent interface in discussing prognosis following MRI and US imaging of preterm infants in the UK

Objective To explore communication and interaction between parents and clinicians following neonatal ultrasound (US) and MRI of the brain of babies born preterm. Setting This qualitative study was undertaken as part of a larger UK study of neonatal brain imaging. 511 infants were cared for in 14 London neonatal units with MR and cerebral US imaging in a specialist centre. Participants Parents with infants born at <33 weeks gestation were randomised to receive prognostic information based on either MRI or US findings on their infants at term-corrected age. Methods Discussions between parents and clinicians about the MRI or US result were audio recorded. Parents were told about the findings and their babys predicted outcome. A topic guide ensured essential aspects were covered. Recordings were fully transcribed. Discussion of the scan results, the content and style of the interaction and parental response were analysed qualitatively in 36 recordings using NVivo V.10. Outcomes Key themes and subthemes were identified in the clinician–parent discussions. Results The overarching theme of ‘the communication interface’ was identified with three key themes: ‘giving information’, ‘managing the conversation’ and ‘getting it right’ and further subthemes. A range of approaches were used to facilitate parental understanding and engagement. There were differences in the exchanges when information about an abnormal scan was given. The overall structure of the discussions was largely similar, though the language used varied. In all of the discussions, the clinicians talked more than the parents. Conclusions The discussions represent a difficult situation in which the challenge is to give and receive complex prognostic information in the context of considerable uncertainty. The study highlights the importance of being able to re-visit specific issues and any potential areas of misunderstanding, of making time to talk to parents appreciating their perspective and level of knowledge. Trial registration number EudraCT 2009-013888-19; Pre-results.

‘A different kind of normal’: parents’ experiences of early care and education for young children born prematurely

ABSTRACT The number of preterm births is increasing globally and in England, yet professional knowledge about the short- and long-term developmental consequences and the psycho-social effect on parents is limited amongst the early years workforce. Using a social-ecological systems theory approach, this paper reports on a mixed-methods study that aimed to explore parents’ experiences of early care and education for young children born prematurely. Findings suggest that having a baby born prematurely has the potential to have a detrimental effect on parent–child bonding and can lead to post-traumatic stress disorder for parents. Parents identified a need for professional training for early years practitioners and teachers to help them understand the concept of ‘corrected age’ and the extra support that children born prematurely (and their parents) might need in attending parent and toddler groups, early years settings and on transition to school, especially if there are also multiple births.

PC.62 Analysis of audio-recordings of discussions between parents and clinicians regarding scanning results

Aim To explore communication between parents and clinicians following neonatal ultrasound and magnetic resonance imaging (MRI) at term of the brain of babies born before 33 weeks gestation. Background Part of a larger study of neonatal brain imaging in which parents were randomised to receive prognostic information based upon MRI or ultrasound findings (ePrime study). Method With parental consent recordings of discussions with clinicians were made following MRI and ultrasound assessment. Parents were told what the scan showed and the baby’s predicted prognosis using a topic-guide to ensure essential information was given. Recordings were transcribed in order to describe the content and style of communication between clinicians and parents. Thirty-five recordings were analysed using a specifically developed framework exploring how results were communicated and parental responses. The framework was based on preliminary analysis of the first 24 recordings and frameworks from other studies of interviewing and information-giving in healthcare. Parents were offered a copy of the recording. Findings Essential information was given in most of the discussions and parity between clinicians was demonstrated. Clinicians used a range of strategies to facilitate parental understanding and engagement. These included sign-posting, use of analogies and open-ended questions, personalising information and responding to parents’ cues. Parents also used strategies to facilitate the discussion and further understanding which included spontaneously asking questions and relating information to their prior knowledge and experiences. Conclusions The interviews represent a complex situation in which there is a compromise between the needs of individual parents and information-giving requirements for clinicians.