ObjectivesTo provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU).DesignAn in-depth qualitative interview study with a sample of parents of children with life-limiting or life-threatening conditions who had died in PICU within the previous 12 months. A thematic analysis was conducted on the interview transcripts.SettingA PICU in a large National Health Service (NHS) tertiary children’s hospital in the West Midlands, UK.Participants17 parents of 11 children who had died in the PICU.ResultsFive interconnected themes were identified related to end of life care decision-making:(1) parents have significant knowledge and experiences that influence the decision-making process.(2) Trusted relationships with healthcare professionals are key to supporting parents making end of life decisions.(3) Verbal and non-verbal communication with healthcare professionals impacts on the family experience.(4) Engaging with end of life care decision-making can be emotionally overwhelming, but becomes possible if parents reach a ‘place of acceptance’.(5) Families perceive benefits to receiving end of life care for their child in a PICU.Conclusions and implicationsThe death of a child is an intensely emotional experience for all involved. This study adds to the limited evidence base related to parental experiences of end of life care decision-making and provides findings that have international relevance, particularly related to place of care and introduction of end of life care discussions. The expertise and previous experience of parents is highly relevant and should be acknowledged. End of life care decision-making is a complex and nuanced process; the information needs and preferences of each family are individual and need to be understood by the professionals involved in their care.

BackgroundThe Child and Young Person’s Advance Care Plan (CYPACP) is a set of resources to help families and professionals agree a plan of care to be followed when a child/young person with a life-limiting condition develops potentially (i) reversible intercurrent illnesses or (ii) life-threatening complications of their condition. It covers clinical, psychosocial and spiritual issues, is designed for use in all environments that the child encounters, and can be used as a resuscitation and/or end-of-life plan. Little is known about the experiences of Ambulance Service staff who receive copies of these plans and may be called upon to follow the recommendations for treatment and resuscitation.MethodsAs part of a regional qualitative research study, families who have a CYPACP and members of the ambulance service were invited to share their views and experiences of the CYPACP via an online survey, in focus groups or individual interviews. Underpinned by an interpretative framework, thematic and linguistic analyses are being used to understand the implementation in ‘real-world’ settings, and how the CYPACP shapes the experience, delivery and quality of care.ResultsTo date 20 families with a CYPACP and 25 members of the ambulance service have taken part. Analysis is on-going. Preliminary findings show that despite families with CYPACPs having multiple experiences of interactions with the ambulance service, it is rare for ambulance crews to attend a call where a child has a CYPACP in place. Findings also suggest that there are critical points within the process of conveying the information contained within the CYPACP document that could be improved.ConclusionFollowing full analysis, it is anticipated that the ambulance services involvement with the CYPACP planning process will be better understood and that improvement strategies, including revision to existing documentation and identification of specific support needs can be made.

Background The experiences of nurses caring for children in Paediatric Intensive Care (PIC) who transition from curative care to palliation and end of life care have the potential to be extremely varied and pose opportunities to be both a privilege and a challenge. A review of the literature was conducted to discover what may already be known about the experiences of nurses caring for children during this time of transition. Method Medline, CINAHL, PsycINFO, Web of Science and ASSIA were searched. The databases were chosen to incorporate a variety of publications with differing disciplinary focus. MeSH and key search terms used included: Terminal care/Palliative care/end of life care Intensive care Paediatric/paediatric Broad terms were used to capture as many articles as possible and were then checked visually for relevance. Results 488 articles were identified, only 8 are included in the review. Reasons for exclusion included duplication focus on communication, education, interventions/change in practice, ethics or law. Settings of the studies were adult intensive care and acute care, and paediatric oncology and acute care. From the 8 articles, the following themes arose: Making a diagnosis of dying and recognising the point of transition – knowing when the time is ‘right’ for a patient to transition to palliative or end of life care. Timing of transition and reaching a consensus Families – reaching a consensus, holding on to false hope Professional issues – emotional burden and crossing boundaries. These all contribute to nurses experiencing frustration and increased levels of stress. There are clear commonalities in these studies; however none specifically explore the experience of PIC nurses in the UK when caring for children transitioning to palliative or end of life care. Conclusion There is a clear gap in the research in this area. There is a qualitative study in a regional PICU being undertaken which will begin to address this.

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Background and aims In a regional Paediatric Intensive Care Unit (PICU) the research team have been recruiting to three multi-centre randomised controlled trials. The team were interested to explore parent’s preference for the research nurses wearing a uniform whilst recruiting to these trials. Method 62 questionnaires were given out to non-research PICU staff (nursing, administrative and medical staff). Multiple choice questions asked what they would prefer to see research nurses wearing when approaching parents about research. 24 questionnaires were given out to parents who had been approached about research trial participation in PICU. Multiple choice questions asked whether they would prefer to be approached for consent by a research nurse wearing a clinical nurse uniform, alternative uniform or their own clothes (pictorial representations given). Results Parental questionnaire return rate was 67%. Responding parents favoured (62%) a uniform with reasons given including ease of identification, trust and professionalism. From the options provided, only 6% chose the ‘own clothes’ option. 32% reported no preference. 31% of parents felt that what the nurse was wearing was likely to have influenced their decision to give their consent, no information was given as to whether this would be in a positive or negative way. Staff questionnaire return rate was 73%. 67% preferred a uniform, 22% an ‘own clothes’ option and 11% reporting no preference. Conclusion The results display a preference towards research nurses wearing a uniform, however there is no agreement as to what that uniform should be. Further research would be needed to conclude whether the wearing of a uniform influences parental decision to consent for their child to participate in research trials and before any recommendations can be made for practice.