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BACKGROUND: Bispectral index (BIS) monitoring uses electroencephalographic data as an indicator of patients' consciousness level. This technology might be a useful adjunct to clinical observation when titrating sedative medications for palliative care patients. However, the use of BIS in palliative care generally, and in the UK in particular, is under-researched. A key area is this technology's acceptability for palliative care service users. Ahead of trialling BIS in practice, and in order to ascertain whether such a trial would be reasonable, we conducted a study to explore UK palliative care patients' and relatives' perceptions of the technology, including whether they thought its use in palliative care practice would be acceptable. METHODS: A qualitative exploration was undertaken. Participants were recruited through a UK hospice. Focus groups and semi-structured interviews were conducted with separate groups of palliative care patients, relatives of current patients, and bereaved relatives. We explored their views on acceptability of using BIS with palliative care patients, and analysed their responses following the five key stages of the Framework method. RESULTS: We recruited 25 participants. There were ten current hospice patients in three focus groups, four relatives of current patients in one focus group and one individual interview, and eleven bereaved relatives in three focus groups and two individual interviews. Our study participants considered BIS acceptable for monitoring palliative care patients' consciousness levels, and that it might be of use in end-of-life care, provided that it was additional to (rather than a replacement of) usual care, and patients and/or family members were involved in decisions about its use. Participants also noted that BIS, while possibly obtrusive, is not invasive, with some seeing it as equivalent to wearable technological devices such as activity watches. CONCLUSIONS: Participants considered BIS technology might be of

Background/Aims Congenital heart disease services are continuing to develop, yet little is known about the experiences of those who have transitioned from paediatric to adult services in the UK. This study explored patients' perceptions and lived experiences of this process to identify factors that contribute to positive and negative experiences, with the view of devising strategies to improve transition. Methods A phenomenological hermeneutical study was conducted using semi-structured interviews. The experiences of six young adults (aged 20–24 years) who had transitioned from paediatric to adult congenital heart disease services were explored. Results Participants saw transition as a milestone and they generally accepted outgrowing paediatric services, despite maintaining a sense of nostalgia for this time. Adjustment to a new service was ongoing and parental support was valued, although issues such as anxiety could be a barrier to the participant assuming responsibility for their own care. Good communication with healthcare professionals, involving individualistic care, consistency and patience, was perceived as a positive influence in adapting to the new service. Conclusions Participants mainly had positive experiences of transition from paediatric and adult congenital heart disease services, with parental and healthcare professional support being valued during and after transition. Healthcare professionals must integrate assessment of physical and psychological needs to support and empower patients and families in order to deliver a smooth transition into adult life and care.

Children with cancer experience pain throughout their cancer trajectory. Pain has short- and long-term negative consequences for children physically and psychologically. Children with cancer spend more time at home with their families and less time in hospital. While this has benefits for quality of life, it shifts responsibility for pain management from healthcare professionals to parents. Little is known about parents' pain management abilities in this setting. This study aimed to understand how parents of children with cancer manage their child's pain at home. A convergent, parallel, mixed methods design including pain diaries, surveys and interviews was used. Participants were parents of children with cancer on active treatment recruited from one tertiary cancer centre. Each data collection method was analysed separately and then integrated. Parents frequently under-medicate their child's pain at home. Practical barriers including the analgesic context and children finding medications unpalatable led parents to prefer non-pharmacological interventions. Attitudinal and practical barriers result in parents having an "empty toolbox" of pharmacological interventions. Consequently non-pharmacological interventions are essential to parents managing their child's cancer pain at home.

AI-based systems use trained machine learning models to make important decisions in critical contexts. The EU guidelines for trustworthy AI emphasise the respect for human autonomy, prevention of harm, fairness, and explicability. Many successful machine learning methods, however, deliver opaque models where the reasons for decisions remain unclear to the end user. Hence, accountability and trust are difficult to ascertain. In this position paper, we focus on AI systems that are expected to interact with humans and we propose our visionary architecture, called ECA-HAI (Explainable, Compliant and Adaptive Human-Automation Interaction)-RefArch. ECA-HAI-RefArch allows for building intelligent systems where humans and AIs form teams, able to learn from data but also to learn from each other by playing “serious games”, for a continuous improvement of the overall system. Finally, conclusions are drawn.

Congenital heart disease (CHD) is the most common birth defect. Little is known of the impact of having a sibling with CHD. Available literature documents negative impact of having a sibling with other chronic conditions. This literature review considers empirical evidence investigating the impact of having a sibling with CHD. Twelve databases were searched, and 202 articles retrieved. Eleven articles met the inclusion criteria and were subject to data extraction, quality appraisal, and narrative synthesis. Three themes emerged: changes in normal life, impact on siblings, and factors affecting the extent of impact on siblings. Only one intervention study was identified, 5 of 10 studies were conducted over 20 years ago, and only 4 studies included children as participants. Evidence suggests siblings of children with CHD experience adverse life changes which lead to negative impacts in several domains. Evidence is inconclusive regarding mitigating factors of these impacts. Further research is needed to understand the experiences of being a sibling of a child with CHD.

AIMS AND OBJECTIVES: To describe pain manifestation in children with cancer at home and understand how parents assess this pain. BACKGROUND: Pain is experienced by children with cancer throughout their cancer journey. Short-term, and into survivorship, pain has negative physical and psychological consequences. Changes in treatment location mean children with cancer spend more time at home. Little is known about pain experienced by children at home or how parents assess this pain. DESIGN: A mixed-methods convergent parallel study was reported using STROBE. METHOD: Parents of children with cancer on active treatment were recruited from one tertiary cancer centre. Parental attitudes towards pain expression were assessed using surveys. Parents recorded their child's pain manifestation in pain diaries kept for one month. Interviews captured a deeper understanding of pain manifestation and how parents assess this pain at home. Integration occurred after each data collection method was analysed separately. RESULTS: Predominantly children were not in pain at home. However, most children experienced at least one episode of problematic pain over the pain diary period. Surveys showed parents held misconceptions regarding children's pain expression. Interviews diverge from surveys and suggest parents used a range of information sources to assess pain. CONCLUSION: Children with cancer may differ from one another in the manifestation of pain at home resulting in multiple pain trajectories. Parents of children with cancer are able to adequately assess their child's pain using information from multiple sources. RELEVANCE TO CLINICAL PRACTICE: It is not currently possible to predict which children will experience problematic pain at home, so all parents require pain management education prior to discharge. Teaching parents to use bundled approaches to pain assessment may accelerate their learning. Healthcare professionals may benefit from using multiple information sources to assess

BACKGROUND: The use of observational measures to assess palliative care patients' level of consciousness may improve patient care and comfort. However, there is limited knowledge regarding the validity and reliability of these measures in palliative care settings. AIM: To identify and evaluate the psychometric performance of observational level of consciousness measures used in palliative care. DESIGN: Systematic review; PROSPERO registration: CRD42017073080. DATA SOURCES: We searched six databases until November 2018, using search terms combining subject headings and free-text terms. Psychometric performance for each identified tool was appraised independently by two reviewers following established criteria for developing and evaluating health outcome measures. RESULTS: We found 35 different levels of consciousness tools used in 65 studies. Only seven studies reported information about psychometric performance of just eight tools. All other studies used either ad hoc measures for which no formal validation had been undertaken (n = 21) or established tools mainly developed and validated in non-palliative care settings (n = 37). The Consciousness Scale for Palliative Care and a modified version of the Richmond Agitation-Sedation Scale received the highest ratings in our appraisal, but, since psychometric evidence was limited, no tool could be assessed for all psychometric properties. CONCLUSION: An increasing number of studies in palliative care are using observational measures of level of consciousness. However, only a few of these tools have been tested for their psychometric performance in that context. Future research in this area should validate and/or refine the existing measures, rather than developing new tools.