Family, child and sibling experiences following loss of a co-twin
Research type
Research Study
Full title
The Butterfly project: family, child and sibling experiences following the loss of a co-twin from a multiple pregnancy
IRAS ID
339167
Contact name
Nicholas Embleton
Contact email
Sponsor organisation
The Newcastle upon Tyne Hospitals NHS Foundation Trust
Duration of Study in the UK
1 years, 10 months, 28 days
Research summary
Baby loss affects over 4,000 women in the UK every year and has long-lasting mental health impacts on parents. Baby loss includes miscarriage, stillbirth and neonatal death and affects friends, co-twin survivors, other siblings, wider family members, healthcare professionals (HCPs) and the public. It is often seen as a taboo subject and is not widely discussed or researched yet has major impacts on health and social care.
When baby loss occurs in a multiple pregnancy it presents specific challenge. Multiple pregnancy includes twins, triplets, and higher order pregnancies, although ‘twins’ is used to describe all such babies.
Our previous research explored the situation where one or more babies die, and where at least one baby survives. We conducted qualitative research with parents, and developed guidelines and teaching packages that are now widely used across the NHS.
The Butterfly project focused on the immediate period following baby loss whilst women and/or their surviving babies were receiving care in hospital. We now want to explore family feelings and experiences during infancy and childhood. This includes topics such as how birthdays are celebrated, how the baby who died is remembered by name, whether there are any impacts on schooling and education, the use of physical objects, and the lifelong impacts on the family and individual’s mental health.
We acknowledge that the important impact on co-twin survivors continues from childhood into adulthood, and that feelings and mental health change over time. We plan to explore experiences in adulthood as a future project, choosing in this project to focus on early and later childhood. However, we will seek insights from co-twin survivors who are now adults (and their parents) to explore their experiences during their childhood.
REC name
North of Scotland Research Ethics Committee 2
REC reference
24/NS/0024
Date of REC Opinion
3 Apr 2024
REC opinion
Further Information Favourable Opinion