Neonatal Palliative Care in Hospice (NePaCH): a qualitative study
Research type
Research Study
Full title
Neonatal Palliative Care in Children's Hospice (NePaCH): a qualitative study
IRAS ID
215389
Contact name
J.E. Price
Contact email
Sponsor organisation
Kingston University
Duration of Study in the UK
1 years, 7 months, 1 days
Research summary
Medical and technological advances have led to an ever increasing number of babies diagnosed with a life threatening/limiting condition, even before birth. It has been stated that families should have a choice where their baby’s care is delivered. Efforts are being made to support infants and families who require palliative and end of life care. Even though there is extensive research in the field of palliative care, little is known about neonatal palliative care. Furthermore, no studies have exclusively examined the care experiences and decision making processes of parents who access a children’s hospice in the neonatal period.
We aim to examine the decision making processes and the care experiences/expectations of parents who have accessed hospice care when their baby’s condition was recognised as life limited in either the perinatal/neonatal period. The overall aim is to improve palliative care to families and babies by making a series of recommendations to inform policy and practice.
Data will be collected and analysed qualitatively. This will consist of: one in depth face-to-face semi-structured interview with parents who have accessed services from one of two children’s hospices located in the South of England within the last 24 months. Nurses undertaking a programme of study in neonatal care and a group of professionals working with children and families at two children’s hospices will be invited to participate in focus groups. Data will be analysed using thematic analysis.
All participants will be given written information and sufficient time to consider participating in the study. Further they will be afforded the opportunity to ask questions about the research before making a decision regarding participation. Written consent will be obtained from those who decide to take part. An independent support strategy for participants has been devised should they need it, in order to minimise risk of negative effects.REC name
Social Care REC
REC reference
16/IEC08/0042
Date of REC Opinion
19 Dec 2016
REC opinion
Further Information Favourable Opinion