Parental perspectives on End of Life care in Neonates.
Research type
Research Study
Full title
Parental perspectives on End of Life care in Neonates. A Comparison of the experience in a hospital to that in a hospice.
IRAS ID
183873
Contact name
Jan Alridge
Contact email
Sponsor organisation
University of Leeds
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
This study aims to determine the parental perspective on end of life care in the perinatal period and to compare care received by the families that had a hospital experience with that of a hospice. It is hoped that this research will help us as clinicians be aware of what matters most to families during this difficult period and how we could best support them.
We would like to recruit 16-20 families in total. We hope to recruit 4-5 parents from the Leeds General Infirmary and 4-5 parents from the Sheffield neonatal units. The babies of these parents would have had their end of life care done exclusively by the neonatal unit. The remaining 8-10 parents would be recruited from the Bluebell Wood and Forget Me Not hospices as their babies would have had their end of life care at the hospice through timely referral. All the parents included in the study will be asked to participate in an audiotaped face to face interview. The aims of the are as follows:
1. To gain an understanding of parental experiences and opinion of the end of life care their baby received.
2. To explore whether parents felt that their opinions were taken into consideration when the end of life care plan was decided and whether they felt supported.
3. To identify themes in parental expectation during perinatal end of life care that can help us improve our services.
4. To compare the parental experiences of patients that had their end of life care done in hospital with those that died in a hospice.
The data will be collected over 1 year.REC name
Yorkshire & The Humber - Leeds West Research Ethics Committee
REC reference
17/YH/0004
Date of REC Opinion
15 Nov 2017
REC opinion
Further Information Favourable Opinion