Project Title

Healthcare service provision for parents who terminate a pregnancy following fetal anomaly diagnosis

Research Focus

Maternal and Child Health; Sexual and Reproductive Health and Rights

Funder & Dates

DfE PhD Studentship Oct 2019 – Oct 2022

Principal Investigator or Primary Supervisor (if PhD project)

Dr Áine Aventin

Co-Investigators or additional supervisors

Prof Mark Tomlinson

Research Fellow(s) or PhD Student

Mrs Suzanne Heaney

Name & Institution of Collaborators

N/A

Name of External Partner Organisations

N/A

Description of Project:

Aim; Methods; Expected Outcomes

Fetal anomaly diagnosis and perinatal death is associated with post-traumatic stress and long-term psychological and emotional distress for mothers, and a growing body of research reports the healthcare experiences and needs of women who terminate pregnancies following prenatal diagnosis. Little is known, however, about the healthcare experiences and needs of women who experience abortion following prenatal diagnosis in countries where abortion is criminalised, and there is a particular dearth of research on the experiences and needs of fathers in this regard. The study aims to identify the healthcare needs and experiences of parents who terminate a pregnancy following fetal anomaly diagnosis in a country where abortion following fetal anomaly is not permitted. The study will meet the following objectives:

• Conduct a systematic review of the international literature, identifying promising service provision models and gaps in evidence;
• Explore the healthcare experiences of parents, paying particular attention to the less understood needs of fathers;
• Identify parents’ healthcare needs;
• Record the experiences and needs of healthcare professionals working with this group of parents;
• Record the views of parents and professionals on promising service provision models identified in the literature; and
• Make recommendations for intervention development, clinical practice and policy reform.

Methods

The proposed research is an exploration of parents’ healthcare experiences and needs incorporating a systematic review of the literature and primary qualitative research with women, their partners and healthcare professionals.

 Systematic Review

Relevant reviews and primary research reporting the healthcare needs and experiences of parents who have an abortion following prenatal diagnosis in countries where abortion for fetal anomaly is not permitted will be located by searching electronic bibliographic databases for published work; grey literature for unpublished work; trial registers for recently completed trials; and the reference list of published studies. Studies will be assessed for quality and we will use the PRISMA Statement (Moher et al., 2009) as a guideline for reporting the review findings.

Primary Research

Thirty women and their partners will be recruited to the study. Parents will be recruited via advertisements placed in relevant online forums and with voluntary organisations. Snowball sampling will also be considered.  Ten healthcare professionals including consultant obstetricians and bereavement midwives working in Health and Social Care Trusts and private clinics will be recruited via letter of invitation.

Data collection will involve in-depth semi-structured individual and (in the case of parents) paired interviews. Interviews will be audio-recorded, anonymously transcribed and subjected to inductive thematic analysis.

Add links/URLs to external pages, e.g., study webpage, reports, publications etc.

N/A

Any other relevant information