Objective Long‐term issues following diagnosis and treatment of a childhood brain tumour often become apparent as the survivor enters adolescence and young adulthood. Their caregivers may additionally face long‐term impacts on their emotional and psychological functioning. This review synthesised evidence on the issues and supportive care needs of adolescent and young adult (AYA) survivors of a brain tumour diagnosed in childhood and their caregivers. Methods Electronic databases were searched up until September 2017. All studies reporting on issues or needs of childhood brain tumour survivors (aged 14‐39) and their caregivers were included. Narrative synthesis methods were used to summarise, integrate, and interpret findings. Results Fifty‐six articles (49 studies) met the inclusion criteria. Social issues (ie, isolation and impaired daily functioning) were most commonly reported by survivors, followed by cognitive (ie, impaired memory and attention) and physical issues (ie, endocrine dysfunctions and fatigue). Survivors experienced poorer social functioning and sexual functioning and were less likely to be employed or have children, when compared with other AYA cancer survivors. Caregivers experienced reduced support as the survivor moved into young adulthood. Caregivers reported uncertainty, increased responsibilities, and problems maintaining their own self–well‐being and family relationships. Few studies reported on supportive care needs. Survivors expressed a need for better educational support and age‐specific psychosocial services. Conclusions Surviving a childhood brain tumour can be particularly challenging for AYA survivors and their caregivers. Robust structured research is needed to identify specific support needs of both survivors and their caregivers and how these can be optimally addressed.

Purpose Teenage and young adult (TYA) survivors of childhood brain tumours and their family caregivers can experience many late effects of treatment that can hamper the transition to living independent lives. Yet, their long-term supportive care needs are largely unknown. We investigated the supportive care needs of TYA survivors and their caregivers and explored the role and perceived use of support. Methods Face-to-face semi-structured interviews were conducted with survivors aged 16–30 (n = 11) who were ≥ 5 years after diagnosis and caregivers (n = 11). Interviews were recorded and transcriptions thematically analysed. Results Four themes emerged: (1) preferences for support and support services (unmet needs). Concerns regarding mental health, employment and financial uncertainty, the desire to live independently, and lack of support were emphasised. (2) Decline in support. Caregivers noted a drop-off in support available when transitioning to adult services. (3) Reasons for not obtaining adequate support. Several barriers to accessing support were raised, including distance and aging out of services. (4) The role of long-term hospital-based follow-up care. Participants highlighted the importance of, and reassurance from, long-term follow-up care but noted a more all-inclusive approach is required. Conclusions Even many years after diagnosis, TYA childhood brain tumour survivors and their caregivers continue to have unmet supportive care needs. Both TYA survivors and their caregivers can benefit from support to meet their unique needs and improve long-term quality of life. Understanding unmet needs and recognising what services are required due to the late effects of treatment is critical to improving long-term quality of survival.

Background: Patients with glioblastoma have a poor prognosis and treatment is palliative in nature from diagnosis. It is therefore critical that the benefits and burdens of treatments are clearly discussed with patients and caregivers. Aim: To explore experiences and preferences around glioblastoma treatment communication in patients, family caregivers and healthcare professionals. Design: Qualitative design. A thematic analysis of semi-structured interviews. Setting/participants: A total of 15 adult patients with glioblastoma, 13 caregivers and 5 healthcare professionals were recruited from Leeds Teaching Hospitals NHS Trust. Results: Four themes were identified: (1) Communication practice and preferences. Risks and side-effects of anti-tumour treatments were explained clearly, with information layered and repeated. Treatment was often understood to be ‘the only option’. Understanding the impact of side-effects could be enhanced, alongside information about support services. (2) What matters most. Patients/caregivers valued being well-supported by a trusted treatment team, feeling involved, having control and quality of life. Healthcare professionals similarly highlighted trust, maintaining independence and emotional support as key. (3) Decision-making. With limited treatment options, trust and control are crucial in decision-making. Patients ultimately prefer to follow healthcare professional advice but want to be involved, consider alternatives and voice what matters to them. (4) Impact of COVID-19. During the pandemic, greater efforts to maintain good communication were necessary. Negative impacts of COVID-19 were limited, caregivers appeared most disadvantaged by pandemic-related restrictions. Conclusions: In glioblastoma treatment communication, where prognosis is poor and treatmentwill not result in cure, building trusting relationships, maintaining a sense of control and being well-informed are identified as critical.

BackgroundChild Health research is reported to be at worryingly low level by the Royal College of Paediatrics and Child Health. Recent survey showed that 54.5% of paediatric consultants in the United Kingdom do not do any research at all. We conducted a mixed methods study to understand barriers and facilitators for research involvement among paediatric trainees who are going to fill these consultant posts in the future.MethodsA questionnaire based on a validated index for research and development was completed by 136 paediatric trainees within a region in the North of England (Yorkshire and Humber). Twelve semi-structured interviews were conducted with stratified purposive sampling. Descriptive statistics and Chi-Square test for independence were used for quantitative analysis. Thematic content analysis was done for interviews based on analysis method framework.Results136 out of 396 trainees responded to the survey. There was a significant relationship between confidence in using research in practice and ability to understand research terminology. This was not related to research experience or training. Males were significantly more likely to have presented a research paper, know how research influences practice and have more confidence in using research in practice than females. There was no significant relationship between gender and research training or highest qualification. Time constraints and lack of academic culture were the most frequently mentioned barriers in the survey.Over-arching themes identified from the interviews were related to lack of academic culture, opportunities provided in current training scheme and constraints related to time availability along with workforce management.ConclusionPaediatric research requires a supportive academic culture with more flexibility in training scheme and immediate attention to a pressing staffing crisis.Electronic supplementary materialThe online version of this article (10.1186/s12909-018-1263-6) contains supplementary material, which is available to authorized users.

BackgroundThere have been concerns about the quality and safety of NHS hospital services since the turn of the millennium. This study investigated the progress that acute NHS hospital trusts have made in developing and using technology infrastructures to enable them to monitor quality and safety following the publication in 2013 of the second Francis report on the scandal at Mid Staffordshire NHS Foundation Trust (The Mid Staffordshire NHS Foundation Trust Public Inquiry. Chaired by Sir Robert Francis QC.Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry. HC 898. London: The Stationery Office; 2013).MethodsA telephone survey of 15 acute NHS trusts in the Yorkshire and the Humber region, and a review of board papers of all acute NHS trusts in England for January 2015, were undertaken. The telephone survey was used to identify trusts for a larger field study, which was undertaken in four acute NHS trusts between April 2015 and September 2016. The methods included the direct observation of the use of whiteboards and other technologies on two wards in each trust, an observation of board quality committees, semistructured interviews and an analysis of the quality and safety data in board papers. Published sources about national and local agencies were reviewed to identify the trust quality and safety data that these agencies accessed and used. An interview programme was also undertaken with those organisations. The Biography of Artefacts approach was used to analyse the data.FindingsThe data and technology infrastructures within trusts had developed over many years. The overall design had been substantially determined by national agencies, and was geared to data processing: capturing and validating data for submission to national agencies. Trust boards had taken advantage of these data and used them to provide assurance about quality and safety. Less positively, the infrastructures were fragmented, with different technologies used to handle different quality and safety data. Real-time management systems on wards, including electronic whiteboards and mobile devices, were used and valued by nurses and other staff. The systems support the proactive management of clinical risks. These developments have occurred within a broad context, with trusts focusing on improving the quality and safety of services and publishing far more data on their performance than they did just 3 years earlier. Trust-level data suggest that quality and safety improved at all four trusts between 2013 and 2016. Our findings indicate that the technology infrastructures contributed to these improvements. There remains considerable scope to rationalise those infrastructures.LimitationsThe four trusts in the main study were, in part, purposively selected, and deliberately biased towards sites that had made progress with designing and deploying real-time ward management systems. This limits the generalisability of the study. The study focused more on the work of nurses and nurse managers, and has relatively little to say about the experiences of doctors or allied health professionals.Future workFuture research might focus on the effects of mobile technologies and electronic whiteboards on acute wards, the value of current national data returns, and the uses and value of trust data warehouses.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

Introduction The supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL). Methods Participants were recruited from long-term follow-up clinics (in three NHS Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13–30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short Form and caregivers the SCNS-Partners & Caregivers, alongside validated QoL questionnaires (Peds-FACT-Br and CQOLC). Results In total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (± 8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (± 12.3) unmet needs. Again, the greatest number of unmet needs was observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers. Conclusion This research provides leads to improving supportive care and long-term follow-up services. Psychological support represents the biggest gap in care. Understanding unmet needs and recognising what services are required are critical to improving quality of long-term survival.

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ObjectiveTo assess developments over time in the capture, curation and use of quality and safety information in managing hospital services.SettingFour acute National Health Service hospitals in England.Participants111.5 hours of observation of hospital board and directorate meetings, and 72 hours of ward observations. 86 interviews with board level and middle managers and with ward managers and staff.ResultsThere were substantial improvements in the quantity and quality of data produced for boards and middle managers between 2013 and 2016, starting from a low base. All four hospitals deployed data warehouses, repositories where datasets from otherwise disparate departmental systems could be managed. Three of them deployed real-time ward management systems, which were used extensively by nurses and other staff.ConclusionsThe findings, particularly relating to the deployment of real-time ward management systems, are a corrective to the many negative accounts of information technology implementations. The hospital information infrastructures were elements in a wider move, away from a reliance on individual professionals exercising judgements and towards team-based and data-driven approaches to the active management of risks. They were not, though, using their fine-grained data to develop ultrasafe working practices.