Node-attribute graph layout for small-world networks

Small-world networks are a very commonly occurring type of graph in the real-world, which exhibit a clustered structure that is not well represented by current graph layout algorithms. In many cases we also have information about the nodes in such graphs, which are typically depicted on the graph as node colour, shape or size. Here we demonstrate that these attributes can instead be used to layout the graph in high-dimensional data space. Then using a dimension reduction technique, targeted projection pursuit, the graph layout can be optimised for displaying clustering. The technique out-performs force-directed layout methods in cluster separation when applied to a sample, artificially generated, small-world network

Insights from parents of a child with leukaemia and healthcare professionals about sharing illness and treatment information: A qualitative research study

Background Many parents report a strong desire to take on information-giving roles, and believe they are best positioned to discuss their child’s illness with their child. Healthcare professionals have a supporting role to reduce the burden on parents who feel responsible for conveying information to their child and other family members. Objective To examine parents’ and healthcare professionals’ perceptions of roles in receiving and communicating information when a child is diagnosed with and treated for acute lymphoblastic leukaemia. Design, setting and participants We used the principles of a grounded theory approach. This was a single site study, recruiting from a principal children’s cancer treatment centre in the United Kingdom. The sample included parents of children receiving and completed treatment for acute lymphoblastic leukaemia (n = 28), and healthcare professionals (n = 34). Methods Methods included individual interviews, face-to-face and telephone, focus groups, and an online forum. Findings Communication ‘touch points’ are many over the course of a child’s cancer journey. We describe often ‘mismatched’ communication encounters where those seeking information and those providing information have different goals. Healthcare professionals in the encounter have expertise at the outset while parents have less expertise, but this expertise grows over time and this can increase the perceptions of this ‘mismatch’ and create different challenges. Conclusions Considered in the context of middle range transition theory, we might suggest that parental foreground (seeking information directly) and background (passive actors) roles are the result of differing levels of uncertainty, and depend on the situation and preferences and child and family needs that may present differently over time in different contexts. Our work contributes to the emerging consensus that communication is more than a core set of skills that healthcare professionals just need to learn: clear specifications of mutual roles, responsibilities and a shared understanding of goals is also essential

Preventing work-related stress among staff working in children's cancer Principal Treatment Centres in the UK: a brief survey of staff support systems and practices

Growing evidence of the association between health professionals' well-being and patient and organisational outcomes points to the need for effective staff support. This paper reports a brief survey of the UK's children's cancer Principal Treatment Centres (PTCs) regarding staff support systems and practices. A short on-line questionnaire, administered in 2012–2013, collected information about the availability of staff support interventions which seek to prevent work-related stress among different members of the multi-disciplinary team (MDT). It was completed by a member of staff with, where required, assistance from colleagues. All PTCs (n = 19) participated. Debriefs following a patient death was the most frequently reported staff support practice. Support groups were infrequently mentioned. There was wide variability between PTCs, and between professional groups, regarding the number and type of interventions available. Doctors appear to be least likely to have access to support. A few Centres routinely addressed work-related stress in wider staff management strategies. Two Centres had developed a bespoke intervention. Very few Centres were reported to actively raise awareness of support available from their hospital's Occupational Health department. A minority of PTCs had expert input regarding staff support from clinical psychology/liaison psychiatry

Pandemic influenza preparedness: an ethical framework to guide decision-making

BACKGROUND: Planning for the next pandemic influenza outbreak is underway in hospitals across the world. The global SARS experience has taught us that ethical frameworks to guide decision-making may help to reduce collateral damage and increase trust and solidarity within and between health care organisations. Good pandemic planning requires reflection on values because science alone cannot tell us how to prepare for a public health crisis. DISCUSSION: In this paper, we present an ethical framework for pandemic influenza planning. The ethical framework was developed with expertise from clinical, organisational and public health ethics and validated through a stakeholder engagement process. The ethical framework includes both substantive and procedural elements for ethical pandemic influenza planning. The incorporation of ethics into pandemic planning can be helped by senior hospital administrators sponsoring its use, by having stakeholders vet the framework, and by designing or identifying decision review processes. We discuss the merits and limits of an applied ethical framework for hospital decision-making, as well as the robustness of the framework. SUMMARY: The need for reflection on the ethical issues raised by the spectre of a pandemic influenza outbreak is great. Our efforts to address the normative aspects of pandemic planning in hospitals have generated interest from other hospitals and from the governmental sector. The framework will require re-evaluation and refinement and we hope that this paper will generate feedback on how to make it even more robust

‘They could not see our eyes, they cannot see our faces, they do not know who we are and that is hard’: a qualitative interview study with staff caring for children and families in a UK specialist children’s hospital during the COVID-19 pandemic

OBJECTIVES: Despite lower rates of illness, morbidity and mortality associated with SARS-CoV-2 infection in children during the COVID-19 pandemic, their health and well-being has been significantly impacted. Emerging evidence indicates that this includes experiences of hospital-based care for them and their families. As part of a series of multisite research studies to undertake a rapid appraisal of perceptions of hospital staff, working during the pandemic, our study focused on clinical and non-clinical staff perceptions of the impact of COVID-19 on aspects of care delivery, preparedness and staffing specific to a specialist children's hospital. DESIGN: Qualitative study using a qualitative rapid appraisal design. Hospital staff participated in a telephone interview. We used a semistructured interview guide, and recorded and transcribed all interviews. Rapid Research Evaluation and Appraisal Lab Rapid Assessment Procedure sheets were used to share data; team-based analysis was facilitated using a framework approach. SETTING: Specialist children's hospital in London, UK. PARTICIPANTS: Thirty-six staff representing a range of roles within the hospital: 19 (53%) nurses, 7 (19%) medical staff and 10 (28%) other staff groups (including radiographers, managers, play staff, schoolteachers, domestic and portering staff and social workers). RESULTS: Three overarching themes relating to staff perceptions of the impact on children and families were identified, each containing subthemes: (1) same hospital but different for everyone, (2) families paid the price and (3) the digital world. They illustrated that providing care and treatment for children and families changed profoundly during the pandemic, particularly during lockdown periods. Adaptations to deliver clinical care, play, schooling and other therapies online were rapidly put into action; however, benefits were not universal or always inclusive. CONCLUSIONS: The disruption to a central principle of children's hospital care-the presence and involvement of families-was of critical concern to staff, suggesting a need for the specific impact of COVID-19 on children's services to be accounted for

The Development of Ambulatory Cancer Care in the UK: A Scoping Review of the Literature

INTRODUCTION: Ambulatory Care (AC), where patients receive inpatient cancer treatment on an outpatient basis, was introduced into the United Kingdom (UK) National Health Service (NHS) in 2004. Although now well established within some services, the development of AC across the NHS is yet to be described. We report findings of a scoping review that set out to understand the provenance of the clinical pathway, whilst exploring drivers for the development of AC in the UK. METHODS: Using scoping review methods, database citation, and grey literature, searches were undertaken to map the storyline of AC’s development internationally. The Joanna Briggs Institute guidance was followed; this included consultation with six professionals considered critical to the development of AC. RESULTS: From the 57 records identified between 1979 and 2022, four domains were identified through a narrative synthesis that reflected the following drivers for AC: financial; optimisation of bed capacity; advances in technology and supportive care; and professional motivation to improve patient experience. CONCLUSION: We report the first descriptive analysis of the international development of AC, locating the UK cancer service within its commissioning, operational, and philosophical foundations. The review additionally highlights limited research exploring the experience of the AC model from the patients’ perspective

Studying children's experiences in interactions with clinicians: identifying methods fit for purpose

Increased emphasis on the child’s voice and point of view in care and treatment has led to an expansion in the development of methods to access and identify their perspectives. Drawing on our experiences in a study of children with leukemia in hospital, this article explains the challenges and opportunities that arise in the use of five commonly used methods in a study of hospitalized children’s experiences with health care professionals, including the “Draw and Write” technique, a sticker activity, a paper–person exercise, informal interviews, and participant observation. Each of these methods was examined with regard to ease of use, data generation, and utility of data for accessing children’s perspectives and development of initial clinical guidance

GPs and paediatric oncology palliative care: a Q methodological study

Objective This mixed-methods study set in the West Midlands region of the UK demonstrates the effectiveness of Q methodology in examining general practitioners' (GPs') perception of their role in children's oncology palliative care. Methods Using data obtained from the analysis of semistructured interviews with GPs who had cared for a child receiving palliative care at home and bereaved parents, 50 statements were identified as representative of the analysis findings. 32 GPs with a non-palliative child with cancer on their caseload were asked to rank the statements according to their level of agreement/disagreement on a grid. They were then asked to reflect and comment on the statements they most and least agreed with. The data were analysed using a dedicated statistical software package for Q analysis PQMethod V.2.20 (Schmolck 2012). A centroid factor analysis was undertaken initially with 7 factors then repeated for factors 1–6. Varimax and manual flagging was then completed. Results 4 shared viewpoints were identified denoting different GP roles: the GP, the compassionate practitioner, the team player practitioner and the pragmatic practitioner. In addition consensus (time pressures, knowledge deficits, emotional toll) and disagreement (psychological support, role, experiential learning, prior relationships) between the viewpoints were identified and examined. Conclusions Q methodology, used for the first time in this arena, identified 4 novel and distinct viewpoints reflecting a diverse range of GP perspectives. Appropriately timed and targeted GP education, training, support, in conjunction with collaborative multiprofessional working, have the potential to inform their role and practice across specialities.</p

Pay More Attention : a national mixed methods study to identify the barriers and facilitators to ensuring equal access to high-quality hospital care and services for children and young people with and without learning disabilities and their families

INTRODUCTION: Despite evidence of health inequalities for adults with intellectual disability (ID) there has yet to be a comprehensive review of how well hospital services are meeting the needs of children and young people (CYP) with ID and their families. We do not know how relevant existing recommendations and guidelines are to CYP, whether these are being applied in the paediatric setting or what difference they are making. Evidence of parental dissatisfaction with the quality, safety and accessibility of hospital care for CYP with ID exists. However, the extent to which their experience differs from parents of CYP without ID is not known and the views and experiences of CYP with ID have not been investigated. We will compare how services are delivered to, and experienced by CYP aged 5–15 years with and without ID and their families to see what inequalities exist, for whom, why and under what circumstances. METHODS AND ANALYSIS: We will use a transformative, mixed methods case study design to collect data over four consecutive phases. We will involve CYP, parents and hospital staff using a range of methods; interviews, parental electronic diary, hospital and community staff questionnaire, patient and parent satisfaction questionnaire, content analysis of hospital documents and a retrospective mapping of patient hospital activity. Qualitative data will be managed and analysed using NVivo and quantitative data will be analysed using parametric and non-parametric descriptive statistics. ETHICS AND DISSEMINATION: The study will run from December 2015 to November 2018. We have Health Authority Approval (IRAS project ID: 193932) for phase 1 involving staff only and ethical and Health Authority Approval for phases 2–4 (IRAS project ID: 178525). We will disseminate widely to relevant stakeholders, using a range of accessible formats, including social media. We will publish in international peer-reviewed journals and present to professional, academic and lay audiences through national and international conferences

Associations between diagnostic time intervals and health-related quality of life, clinical anxiety and depression in adolescents and young adults with cancer:cross-sectional analysis of the BRIGHTLIGHT cohort

The association of diagnostic intervals and outcomes is poorly understood in adolescents and young adults with cancer (AYA). We investigated associations between diagnostic intervals and health-related quality of life (HRQoL), anxiety and depression in a large AYA cohort.Participants aged 12-24 completed interviews post-diagnosis, providing data on diagnostic experiences and the patient-reported outcomes (PROs) HRQoL, anxiety and depression. Demographic and cancer information were obtained from clinical and national records. Six diagnostic intervals were considered. Relationships between intervals and PROs were examined using regression models.Eight hundred and thirty participants completed interviews. In adjusted models, across 28 of 30 associations, longer intervals were associated with poorer PROs. Patient intervals (symptom onset to first seeing a GP) of ≥1 month were associated with greater depression (adjusted odds ratio (aOR):1.7, 95% Confidence Interval (CI):1.1-2.5) compared to <1 month. ≥3 pre-referral GP consultations were associated with greater anxiety (aOR:1.6, CI:1.1-2.3) compared to 1-2 consultations. Symptom onset to first oncology appointment intervals of ≥2 months was associated with impaired HRQoL (aOR:1.8, CI:1.2-2.5) compared to <2 months.Prolonged diagnostic intervals in AYA are associated with an increased risk of impaired HRQoL, anxiety and depression. Identifying and delivering interventions for this high-risk group is a priority