Education issues
Neonatal palliative and end of life care: What parents want from professionals

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Abstract

An inductive study of parents experiences of palliative and end of life neonatal care, which yielded rich qualitative data in the form of ‘in vivo’ quotations from parents representing real experiences. Utilizing an internet parental support forum the researcher captured and collated the responses from parents to two key questions. Initial themes were discovered following a thematic analysis and confirmed by presentation to a multiprofessional body during a series of related conference events. In addition, email responses from other parents and subsequent comments and feedback that were captured at the conference days were added to the data set.

The study concluded that feedback regarding clinical practice to care providers can positively effect changes in practice evidenced by for example appropriate referrals of at least two families to a hospice team in the antenatal stage.

In addition this work has contributed to the evidence base supporting the newly published Midlands Newborn Networks Integrated Comfort Care Pathway (ICCP). Work is underway to develop a care pathway to facilitate the transfer of neonates from hospital to a hospice setting to receive palliative or end of life care, therefore supporting an additional option to families within the region.

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)

  • Association for Children's Palliative Care [ACT]

    A Neonatal Pathway for Babies with Palliative Care Needs

    (2009)
  • BAPM

    Palliative Care (Supportive and End of Life Care) a Framework for Clinical Practice in Perinatal Medicine

    (2010)
There are more references available in the full text version of this article.

Cited by (0)

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.

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