Parental experience of perinatal end of life care
Research type
Research Study
Full title
Perinatal end of life care: a study of parental experience of their baby's end of life care in a hospice and neonatal intensive care unit.
IRAS ID
153694
Contact name
Emily Harrop
Contact email
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
52% of all deaths in children age 14 and under in 2011 occurred in the neonatal period - around 2000 neonates die annually in the UK from causes likely to require palliative care and at present 98% of those deaths occur in a hospital setting.
Awareness of this has prompted a national move towards quantifying and improving palliative care services for neonates. The National Health Service (NHS) South Central Neonatal Network framework for neonatal palliative care was developed in 2012 as a response to this, following national guidance issued by Association for Children’s Palliative Care (ACT) in 2009.
The aim of the study is to examine parent’s experiences of the end of life care their baby received in either the NICU or hospice, and consider how these experiences might be improved. The study will use a qualitative approach. Parents whose babies died either in the NICU or hospice will be interviewed once for no more than forty-five minutes using semi-structured interviews. Interviews will be transcribed verbatim and a thematic content analysis performed.
This study asks the question “What are the experiences of parents of their baby’s end of life care, and how do they differ when that care is delivered in a children’s hospice or neonatal intensive care unit?”.
REC name
South Central - Oxford C Research Ethics Committee
REC reference
14/SC/1276
Date of REC Opinion
14 Oct 2014
REC opinion
Further Information Favourable Opinion