The NeoPACE study: stakeholder identified outcomes of neonatal palliative care – a qualitative study

Abstract Background Annually, over 1000 babies die in the neonatal period and receive end-of-life (EoL) care on neonatal units in the United Kingdom. There are wide reported variations in provision and no accepted measures with which to assess the quality of EoL services. As part of a programme of work to identify a Core Outcome Set (COS) for neonatal palliative care, this qualitative study aimed to explore the experiences, perceptions and priorities of stakeholders (parents and healthcare professionals) of neonatal palliative care, to identify outcomes for a future Delphi survey. Method Semi-structured online interviews were conducted with parents ( n = 17), and healthcare professionals ( n = 21) with lived or professional experience of neonatal palliative care respectively (total n = 38). Interviews were recorded. Verbatim transcripts were analysed in NVivo using a modified or hybrid form of thematic analysis based upon the Framework Method. Interviews were inductively analysed prior to deductively mapping identified themes onto the World Health Organisation (WHO) domains of palliative care (physical, psychological, spiritual, social). Parent and healthcare professional interviews were analysed separately. Results were compared to findings of a previously published systematic review to identify evidence gaps in the literature. Results Thirteen themes were identified across all interviews; ten themes were shared between parents and healthcare professionals and a further three themes were identified from parent interviews alone. Five themes fitted within the physical domain (decision making, planning for EoL care, symptom management, parallel planning, maternal care); four themes in the psychological domain (antenatal care, preparation for EoL, bereavement care, multiple birth family support); two in the spiritual domain (individualised care, funeral planning), and two in the social domain (advance care planning, service provision). Only four of thirteen themes had been identified in the previously published systematic review. Conclusion Parents and healthcare professionals identified potential outcomes across all WHO domains from which to evaluate neonatal palliative care, and which had not previously been highlighted in the literature. The findings demonstrate the multifaceted nature of neonatal palliative care and emphasise the importance of communication, family support, and equal access to services. Outcomes identified in this study will be assimilated with findings from our systematic review to develop a COS for neonatal palliative care.