Care of the preterm or low birthweight infant, Parents
National Institute for Health Research
Preterm birth is the leading cause of perinatal mortality and morbidity in developed countries, and leads to neurological impairment in a significant proportion of survivors. Targeting follow-on services to children who need them is difficult, particularly with inaccurate early diagnosis of neurodevelopmental impairment. In a research environment magnetic resonance imaging (MR) is more accurate at detecting cerebral abnormalities than standard care cranial ultrasonography and might provide a more accurate neurological prognosis and improve overall care.
The aim of the research programme will be to provide the evidence-base for NHS policy on the use of MR of the brain for preterm infants. The component project objectives are: to determine with high precision the sensitivity and specificity of cerebral MR imaging for predicting neurodevelopmental impairment in the context of the NHS; to use a randomised design to compare the effect of MR and ultrasound imaging on total healthcare usage and costs, and assess its effect on unplanned and planned care; to compare the influence of MR- and ultrasound-based information on parental perceptions, stress and coping using qualitative and quantitative research methods and to compare routine local bedside imaging with specialist centralised ultrasound imaging; and to survey current MR use and capacity in the NHS.
The NPEU element focuses on the experience and wellbeing of parents following diagnosis and for the first two years of their infant's life, using both quantitative and qualitative methods. Initial qualitative work focused on parents whose babies had been cared for in a neonatal intensive care unit to support the development of appropriate data collection instruments for use with parents in the main study.
The paper was published:
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, and doctors and other parents were also important sources.
Parents emphasised the value of attending ward rounds.
Some felt accessing specific information such as the results of brain imaging could be difficult and concerns about long-term developmental outcomes 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. Following cerebral ultrasound and MR recordings when the infants were around term, a subset of clinician-parent discussions were audio-recorded and analysed qualitatively.
The ways in which clinicians gave information varied and a wide range of approaches were used to facilitate parental understanding.
These included orienting, checking on previously acquired information, using analogies, explaining terminology, pacing the information, confirming understanding, inviting clarification, answering parents' questions and recapping at intervals.
Four key themes were identified: 'Framing the information-giving', 'What we are looking at', 'Presenting the numbers and explaining the risk' and 'Appreciating the position of parents' 'Qualitative study of the clinician-parent interface in discussing prognosis following MRI and US imaging of preterm infants in the UK.' http://bmjopen.bmj.com/content/6/9/e011472.long
The overarching theme of the communication interface was identified with three key themes: giving information, managing the conversation; and getting it right.
A variety of approaches were used in interacting with parents.
There were differences in the exchanges when information about an abnormal scan was given.
In all of the discussions, the clinicians talked more than the parents.
The clinician-parent discussions represent a difficult situation in which the challenge is to give and receive complex prognostic information in the context of considerable uncertainty. Qualitative analysis of parent interviews when the children were one and two years of age have been carried out and a paper has been submitted on parents' experience of participating in a trial. A full report of all of the components of the programme of work has been submitted to NIHR.