PeriviAble DeLiveries: ALIgning PArental aNd PhysiCian PrioritiEs
Research type
Research Study
Full title
PeriviAble DeLiveries: ALIgning PArental aNd PhysiCian PrioritiEs (ALLIANCE)
IRAS ID
307646
Contact name
Ajit Mahaveer
Contact email
Sponsor organisation
Manchester University NHS Foundation Trust
Duration of Study in the UK
0 years, 9 months, 2 days
Research summary
Outcomes of infants born at the cusps of viability (22+0 - 24+6 weeks) are highly variable with a significant proportion of infants dying in the delivery room or neonatal period, and survivors facing a high risk of lifelong impairment. However, there are infants born at this gestation that survive with mild or even no long-term impairments. The spectrum of potential outcomes and the high level of variability in terms of extent of neonatal intensive care that each infant may require makes pre-delivery decision-making conversations with parents extremely difficult to conduct. These conversations often focus on physician priorities, rather than exploring the parental viewpoint and long-term questions and concerns. The information presented to parents may be skewed by the physician's own moral standpoint on intervening at these extreme gestational ages, and therefore, issues of nudging and epistemic injustice have the potential to be rife in the content and way these conversations are held.
The ALLIANCE project aims to investigate this issue through a multi-staged approach. The project will start with a literature review to establish current recommendations for periviable decision-making conversations and synthesis of the ethical and communication issues pertinent to this. Our team will the conduct 40 semi-structured interviews with parents and senior clinicians who have been involved in periviable conversations (20 parents who have experienced periviable delivery within the last 6-12 months and 20 clinicians (10 obstetricians and 10 neonatologists)). The third phase of the project will be to send out developmental assessment surveys and free text questionnaires to parents who delivered at periviable gestations 2-10 years ago. This phase will assess the neurodevelopment outcomes of periviable infants as rated by parents and also provide parental feedback on long term perceptions of raising a periviable child and what these parents would consider important to be included in pre-delivery periviable decision-making conversations.REC name
North West - Liverpool Central Research Ethics Committee
REC reference
22/NW/0052
Date of REC Opinion
14 Apr 2022
REC opinion
Further Information Favourable Opinion