The DECISIONS Study – Describing Experiences of Counselling, Information, and Support for In-Utero Anomalies On Neuroimaging – a mixed methods approach

This qualitative interview study aims to explore the experiences of women / pregnant people, and their partner to the diagnosis and discussion of a brain abnormality in an unborn baby. 

Background:

Screening is a routine part of pregnancy and includes an ultrasound scan at 20 weeks gestation. This can detect abnormalities to the fetal brain, as well as to other parts of the fetal body. When an abnormality is found, further tests may be undertaken, such as genetic or infection tests, or magnetic resonance imaging (MRI) of the unborn baby.

When any form of abnormality is diagnosed, pregnant women / people feel shock and trauma. This is potentially all the greater for fetal brain abnormalities where developmental difficulties / disabilities can result. There are few data specifically on pregnant women / people’s reactions to fetal brain abnormalities – most of the data comes from other conditions, such as genetic disorders – or how they perceive the counselling they received. There are even less data on how their partners’ (or supporting family member or friends) felt during the counselling. The data that does exist are strictly heteronormative and mainly in Caucasian people.

Similarly, there are no data on how clinicians involved in fetal counselling feel about this counselling. We do not know what resources they need or if there are barriers to providing robust information.

Aims

This study aims to describe the experiences of families whose fetus has a brain abnormality and have received counselling. We intend to seek evidence on the experience from three groups:

1. Pregnant women / people whose fetus has a brain abnormality
2. Supporting partners / family members / friends of a pregnant woman / person whose fetus has a brain abnormality

Brief methodology

Participants will be identified through advertisements and social media organised by charities and professional bodies such as SHINE, ARC, the British Paediatric Neurology Association (BPNA), the British Academy of Childhood Disability (BACD), British Paediatric Neurosurgery Group (BPNG), from NHS Fetal Medicine services nationally, social media, such as Forums, Facebook and Twitter, and a snowball technique, i.e., where participants identify other people they know who may be interested in involvement.

Participants who consent to enrolment will be invited to a semi-structured qualitative interview online. Participants will be able to discuss any topics they want, as well as the questions on a topic guide. The interviews will be recorded, transcribed verbatim, and deidentified. Thematic analysis will be used to identify codes and themes by at least two researchers, using an iterative approach. Training in qualitative research methods will be available to those with no experience in them.

Impact

Based on the results, we will produce recommendations and training on how to perform antenatal counselling for fetal brain abnormalities to improve care.

The team

The team supporting the student will be multidisciplinary. Dr Hart is a paediatric neurologist who has experience in qualitative research methodologies and provides fetal counselling in a large London centre. He is a UK expert in fetal neurology and provides training across the UK in this field. Dr Hart will provide support for the clinical aspects, daily running, and qualitative research methods of the study. Prof Greenough is a Consultant Neonatologist with extensive experience of research at KCL of many different types. She will help with the University aspects of the study, including training and thesis-writing, and will provide primary supervision. Assoc Professor Hilary Piercy is a qualitative researcher in Sheffield Hallam University. She is a researcher in the social aspects of health care delivery. As a previous midwife, she has an interest in antenatal care and has co-authored reviews on the experiences of families to a diagnosis of a fetal anomaly. Prof Piercy will provide support on the qualitative aspects of the study, particularly thematic analysis. There will also be access to support from Fetal Medicine Specialists, including Prof Kypros Nicolaides.

Benefit to the student

The student will be trained in qualitative interview measures, including how to perform interviews, write tool, and perform thematic analysis. These skills will be transferable to future qualitative research studies the student wishes to participate in. They will also gain some experience of diagnosis in fetal medicine, prognostication following diagnosis of brain abnormalities, and subsequent developmental outcomes. These will be useful if the applicant wishes to work or perform research after the project in either Fetal Medicine, Obstetrics, or Child Development / Neuroscience. There will be considerable exposure to participants’ feelings and emotions following a diagnosis, which will need to be managed sensitively. Gaining an understanding of how serious events affect people, along with how they deal with these emotions and work as a families, will give the applicant real-life experience of the psychological aspects of parenthood and living with a child with a brain abnormality. This will be useful for those aspiring to work in a psychology or social care setting. 

Eligibility

1. Suitable postgraduate experience, such as MA or MSc in a relevant subject
2. Basic understanding of NHS structures and services, particularly with relation to maternity care
3. Good communication skills in English, with empathy, compassion and insight

English Language Requirements:

Must speak fluent English 

Application Process

For further details on the application process please visit the studentship webpage.