Education issuesNeonatal palliative and end of life care: What parents want from professionals
Introduction
This article explains the background and processes leading to the collection of rich data derived from parents' responses to two simple questions. These findings were collated and presented at a series of regional study days in the Midlands and have subsequently contributed to the evidence base on which an integrated comfort care pathway (MNN, 2011) has been devised.
Section snippets
Background
The combined Midlands Newborn Networks initiated a neonatal palliative care project (SWMNN, 2011) supported by the Department of Health from monies set aside for Children's Palliative Care projects. The project comprised a number of strands, including educational events, the development of a specific care pathway and clinical guidelines. The evidence base in support of care and practices was derived primarily from a number of newly published sources that included the ACT neonatal palliative
Aims and objectives
The aim was to determine what parents had actually experienced relating to neonatal palliative and end of life care and determine how this knowledge could be used to improve experiences for families in future. In essence, we hoped to discover issues not normally raised or even discussed, to provide a different perspective and by feeding this back to staff, to influence a change for the better.
Methods
As a member of the Stillbirth and Neonatal Death Society (SANDS) online support community our Project Parent Representative posted a message on the forum asking if anyone would be willing to answer related questions. Additional data was captured from personal friends and acquaintances made through related mutual support networks.
In each instance a detailed explanation of the project work, its rationale and the use and application of data was provided. Individuals gave their consent and answered
Results
The eight themes that emerged were: Creating memories; Empathy; Time and space; Practical help and understanding; Sensitivity; Communication with parents; Accurate record keeping and communication; In utero; and Support afterwards. These will be described and considered in the section below.
Discussion
A primary consideration is the extreme emotions surrounding the death of a baby, in whatever circumstances. Experiences seem to be remembered by parents as extremely positive or truly awful; there is little middle ground. There is only one chance for the family to get things ‘right’.
Parents' abilities to process information and make decisions seemed diminished in their grief. Seemingly small events and interactions with staff became magnified and appeared overwhelming. Time was often short and
Limitations
The study has limitations in that it was undertaken by a lone researcher as part of a scoping exercise within a bigger project therefore may lack some of the formal research rigour that may be expected in academic research design.
Conclusion
This small survey illustrates a range of parental experiences both good and bad. Parental interpretation indicates that memories may be heightened in harrowing conditions, consequently both adverse and positive experiences, will remain fresh for many years. Care providers could take heed of the conditions that enhanced positive and negative experiences and develop services that are appropriate to meet family need as a complement to developing and implementing appropriate comfort care pathways.
Acknowledgements
The authors would like to thank the Parents and families that were willing to share their stories as we endeavour to improve the care and services that we provide in these difficult circumstances. We also thank the four Newborn Networks, Midlands Neonatal Palliative Care Project Team and SANDS for their support.
Kate Branchett is mum to Ben (aged 6) and Molly (aged 2). Her second son Georgie was diagnosed at 17 weeks gestation with anencephaly and was delivered shortly afterwards. Molly is a surviving twin, born at 23 weeks gestation, but is now a happy, healthy toddler, doing as well as could possibly being expected. Her twin sister Izzy was born 8 days previously and lived for just 2 h. Kate is passionate about improving services for all families.
References (5)
A Neonatal Pathway for Babies with Palliative Care Needs
(2009)Palliative Care (Supportive and End of Life Care) a Framework for Clinical Practice in Perinatal Medicine
(2010)
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Kate Branchett is mum to Ben (aged 6) and Molly (aged 2). Her second son Georgie was diagnosed at 17 weeks gestation with anencephaly and was delivered shortly afterwards. Molly is a surviving twin, born at 23 weeks gestation, but is now a happy, healthy toddler, doing as well as could possibly being expected. Her twin sister Izzy was born 8 days previously and lived for just 2 h. Kate is passionate about improving services for all families.
Jackie works as the Lead Practice Educator for the SWMNN, a member of the Midlands Neonatal Palliative Care Project Team, Visiting Lecturer at Coventry University facilitating the ‘Palliative And End Of Life Care For Neonates’ Module.