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

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.