Professor Faith Gibson

Objectives: There is a global increase in the number of women diagnosed with cancer during their pregnancy and a nascent evidence base to guide their supportive care. The purposes of this study were to (1) map research on the psychosocial issues affecting women and their partners on diagnosis and treatment for cancer during pregnancy; (2) determine available supportive care or educational interventions; and (3) identify knowledge gaps for future research and development. Design: Scoping review. Search strategy: Six databases were searched (Scopus, CINAHL, PsycINFO, Medline, Intermid, Maternal and Infant Health) to retrieve primary research (January 1995 to November 2021) investigating women and/or their partner’s decision-making and their psychosocial outcomes during and after pregnancy. Data extraction and synthesis: Sociodemographic, gestational and disease characteristics of participants and psychosocial issues identified were extracted. Leventhal’s self-regulatory model of illness provided a framework for mapping study findings enabling evidence synthesis and gap analysis. Results: Twelve studies were included, conducted in eight countries in six continents. Most women (70% of 217) were diagnosed with breast cancer during pregnancy. Reporting of sociodemographic, psychiatric, obstetric and oncological characteristics that are important in assessing psychosocial outcomes was inconsistent. None of the studies had a longitudinal design and no supportive care or educational interventions were identified. The gap analysis highlighted the lack of evidence about pathways to diagnosis, impact of late effects and how internal/social resources may affect outcomes. Conclusions: Research has focused on women with gestational breast cancer. Little is known about those diagnosed with other cancers. We encourage future study designs to capture data on sociodemographic, obstetric, oncological and psychiatric characteristics and adopt a longitudinal approach to explore the longer term psychosocial impact on women and their families. Future research should include outcomes that are meaningful for women (and their partners) and draw on international collaboration to accelerate progress in this field.

Background Patient and public involvement (PPI) in research is widely acknowledged as essential to achieving successful and impactful research. Despite this acknowledgement, there are limited reports on how to approach and apply meaningful PPI throughout the research cycle and how to address challenges for researchers such as doctoral students, particularly when undertaking research on sensitive topics. This paper provides insights and examples for researchers new to PPI, on the impact of active PPI and recommendations for building and developing a PPI group in a paediatric focused doctoral research study with bereaved parents and carers. Methods PPI was informed by the research cycle. The GRIPP2 short-form checklist was used to report PPI. The research was funded by the National Institute for Health and Care Research. Results PPI enhanced the research through input into the study design, recruitment, co-design of the study website and branding; and ethics amendments to increase participation in response to the COVID-19 pandemic. The literature review was extended to incorporate a PPI consultation phase and members contributed to data analysis. A flexible approach enabled involvement to develop iteratively throughout the research study, resulting in changes being made to enhance the study design and outcomes. Conclusion This paper contributes to the limited knowledge base on embedding PPI into a doctoral research study and within the paediatric setting specifically working in partnership with bereaved parents and carers. Employing an adaptive approach to meet individual PPI needs, building a trusting and respectful partnership, creating shared ownership and investment in the research, are essential components to successful PPI.

The process of transitioning young people from children's or adolescents' health services into adults' services is a crucial time in the lives and health of young people and has been reported to be disjointed rather than a process of preparation in which they are involved. Such transitions not only fail to meet the needs of young people and families at this time of significant change, but they may also result in a deterioration in health, or disengagement with services, which can have deleterious long-term consequences. Despite the wealth of literature on this topic, there has yet to be a focus on what works for whom, in what circumstances, how and why, in relation to young people transitioning from children's into adults' services, which this realist synthesis aims to address. This realist synthesis will be undertaken in six stages: (1) the scope of the review will be defined; (2) initial programme theories (IPTs) developed; (3) evidence searched; (4) selection and appraisal; (5) data extraction and synthesis; and (6) finally, refine/confirm programme theory. A theory-driven, iterative approach using the 'On Your Own Feet Ahead' theoretical framework, will be combined with an evidence search including a review of national transition policy documents, supplemented by citation tracking, snowballing and stakeholder feedback to develop IPTs. Searches of EMBASE, EMCARE, Medline, CINAHL, Cochrane Library, Web of Science, Scopus, APA PsycINFO and AMED will be conducted from 2014 to present, supplemented with grey literature, free-text searching (title, abstract and keywords) and citation tracking. Data selection will be based on relevance and rigour and extracted and synthesised iteratively with the aim of identifying and exploring causal links between contexts, mechanisms and outcomes. Results will be reported according to the Realist And Meta-narrative Evidence Syntheses: Evolving Standards Quality and Publication Standards. This realist synthesis forms part of the National Transition Evaluation Study, which has received ethical and regulatory approval (IRAS ID: 313576). Results will be disseminated through peer-review publication, conference presentations and working with healthcare organisations, stakeholder groups and charities. NCT05867745. CRD42023388985.

Parents often become involved in making treatment decisions for their child with cancer when there is no standard treatment protocol, typically seen in poor-prognosis cancers. Advances in scientific medicine has led to more treatment options being available for children resulting in parents making repeated treatment decisions depending on their child's response to treatment. The emotional turmoil of their child's cancer diagnosis can be exacerbated when combined with making decisions that have uncertain outcomes. This study aimed to identify, describe, explore, and explain how parents made repeated treatment decisions and the role of emotion in decision-making when their child had relapsed or refractory neuroblastoma, a poor-prognosis cancer. Data were collected using qualitative interviews between 2020 and 2022 with parents of children with relapsed or refractory neuroblastoma in the United Kingdom. Data were analysed using Reflexive Thematic Analysis. Eighteen parents who made between one to six treatment decisions participated. Decision-making incorporated four themes which enabled, influenced, and informed how parents made treatment decisions: 1) time as a structure within decision-making; 2) uncertainty and its relationships with treatment risk, side effects and outcomes; 3) parent oscillation of their cognitive and emotional adjustment; 4) parent responsibility and involvement in decision-making. Time was the central organising concept which structured and organised parent decision-making. We adopted Orlikowski and Yates’s (2002) temporal structures to characterise the experience of time and Stroebe and Schut’s (1999) dual-processing theory to explore the oscillation of parent adjustment of their situation cognitively and emotionally. A conceptual framework showed the interrelationships of these themes.

Context With the ever-increasing need for digital health innovations, the transition to electronic patient records (EPR) is an integral part of the digital health revolution. There is an increasing body of literature on EPR use in the adult hospital setting, particularly related to adoption as a result of financial incentives in the United States (US). The experiences and perceptions of EPR users within the pediatric hospital setting are less well understood, despite the advent of patient portals accessible by children and young people (CYP) and their parents, which bring new benefits and challenges for them and healthcare professionals alike. Objectives The aim of this review was to understand the experiences and perceptions of all relevant stakeholders using an EPR system in the pediatric hospital setting, including the use of an EPR-linked patient portal. Methods Studies were identified through electronic database and citation searching, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A systematic search was conducted in EMBASE, EMCARE, MEDLINE, Cochrane Library, Web of Science, Scopus, CINAHL, and PsycINFO electronic databases to identify literature published 2010–present, in addition to manual searching of conference abstracts, and research reports searched via the Health Research Authority website. Inclusion criteria were studies reporting on an EPR system in use in hospital setting where child patients (from 0 to 17.9 years) are cared for, with or without an EPR-linked patient portal. Results Thirty-six out of 42,946 articles were eligible for inclusion, almost two-thirds were studies conducted in the US. A wide range of benefits, challenges, and information and support needs were reported. Strategies for successful implementation and design improvements were suggested, as was desirable portal functionality and parental intention to use, or reasons for not using the portal. Several ethical and legal issues were raised. Conclusions Experiences of using EPRs and patient portals were wide-ranging with challenges more prevalent soon after implementation. Although tailoring information and support to users’ individual needs and practice context can be complex, this is essential to enable prolonged utility, user satisfaction and engagement, which, in turn, will promote effective care provision. Disease-specific portals may increase utility, and taking into consideration children’s and young people’s needs and preferences is essential.

Background: Technology is becoming an important medium for supporting patients in health care. However, successful application depends on user acceptability. The Advanced Symptom Management System (ASyMS©) involves patients reporting cancer chemotherapy-related symptoms using mobile phone technology. Objective: The aim of this article was to report a study of how young people were involved in the development of ASyMS© using the Medical Research Council framework for evaluating complex interventions. Methods: A convenience sample of young people aged 13 to 18 years undergoing cancer chemotherapy were recruited from 2 principal cancer treatment centers in London. Results: In phase 1, young people selected 5 symptoms from an adapted version of the Memorial Symptom Assessment Scale that were most important to them. In phase 2, young people completed the ASyMS©-YG PDA (personal digital assistant) questionnaire daily on days 1 to 14 of a cycle of chemotherapy and pre/post-use questionnaires. In phase 1, 5 young people chose diarrhea, nausea, vomiting, constipation, and weight loss as the most important symptoms. In phase 2, 25 young people reported positively to using PDA technology, found ASyMS©-YG simple and easy to complete, and liked that they were monitored at home. In addition to the 5 core symptoms, the ASyMS©-YG reports showed the number (n = 37) of other symptoms young people experienced. CONCLUSIONS:: This early development work indicates the acceptability of ASyMS©-YG and has informed an exploratory trial (phase 3) and randomized controlled trial (stage 4). Implications for practice: This study reaffirms the importance of promoting communication between young people and health professionals. Copyright © 2010 Lippincott Williams & Wilkins.

Qualitative research is about people’s lives; their stories, their thoughts, their feelings, and their experiences. Researchers continue to reflect on the best way to present other people’s stories in a way that stays true to their accounts and delivers the message in a manner which resonates. This article presents one such way, discovered through serendipity, which allowed the researcher to share findings from young people’s stories eloquently and passionately to audiences of healthcare professionals from different disciplines. The silence and raw emotion witnessed after the poetry delivery was akin to that often seen during childbirth when those around are stunned into thoughtful awe. The poetry, which was crafted entirely from young participant’s interview transcripts had two benefits; 1) sharing young people’s stories using their own words and 2) using a presentation format that demanded attention; so that people took notice, listened and reflected on the words and experiences being expressed.

Research with young people suffering from a long-term illness has more recently incorporated the use of visual methods to foster engagement of research participants from a wide age range, capture the longitudinal and complex factors involved in young people's experiences of care, and allow young people to express their views in multiple ways. Despite its contributions, these methods are not always easy to implement and there is a possibility that they might not generate the results or engagement initially anticipated by researchers. We hope to expand on the emerging discussion on the use of participatory visual methods by presenting the practical issues we have faced while using this methodology during different stages of research: informed assent/consent, data collection, and the dissemination of findings. We propose a combination of techniques to make sure that the research design is flexible enough to allow research participants to shape the research process according to their needs and interests.

Background Despite increasing international awareness of the impact of cancer on young adults, to date there has been limited in-depth research to understand their experiences following a diagnosis using a qualitative and longitudinal perspective. Objectives To explore the impact of cancer on young adults’ evolving sense of self and identity over one year from the time of diagnosis. In addition, to contribute further to an understanding of innovative research methods used to examine this experience. Design This was a longitudinal narrative study using visual methods and a psychosocial lens. Narrative was used to re-present experiences over time. Setting and Sample Recruitment was from a Principal Treatment Centre for Teenagers and Young Adults with Cancer and a Cancer Centre for Adults in the United Kingdom. Total population sampling was used over a six-month period, recruiting 18 young adults aged between 16 and 30, one to three months from a diagnosis of bone cancer, lymphoma or leukaemia. Methods In depth, free association narrative interviews at three-time points over a year were undertaken. Photographs were used to help with story-telling. Extensive reflexive field notes, debriefing and the use of a psychosocial research group, also formed data sources. Forty interviews were conducted with 18 participants: eight took part in three interviews, six in two interviews and four in one interview. Analysis focused on the holistic ‘case’ of the individual temporally. In-depth, visual images were analysed from discussion in the narrative text. Through memoing, coding and comparison, themes were developed across all cases and a conceptual framework developed. Results The conceptual framework illustrates the renegotiation of self over time through narrative. This was ‘biographically’ during young adult development and across ‘cancer time’; through the core components of: the inner world, (psyche, emotion and coping); self as embodied; self as relating to others, and self as relating to place. Stories indicated that there was a constant inter- relationship over time between the renegotiation of identity and adaption of biography. Conclusions The focus in this paper is on ‘the temporality of cancer’ through the first year from diagnosis, and the juxtaposed process of managing biographical and developmental milestones. The importance of developing health care and research which enables narrative and the patient's voice has been highlighted. It emphasizes the need for professionals to ‘be with’ and ‘walk alongside’ through the intensity of a biographically and identity changing illness.

The number of individuals who have successfully completed treatment for a cancer diagnosed during childhood and are entering adulthood has been increasing. Members of the International Berlin-Frankfurt-Munster Early and Late Toxicity Educational Committee (ELTEC) invited 45 paediatric cancer experts - representing oncologists, psychologists, nurses, epidemiologists, parents, and survivors - from 13 European countries, with five additional experts from North America, to Erice, Sicily, on October 27-29, 2006, to discuss the circumstances in which the word "cure" should be used when speaking about children with cancer, and when and why continuing follow-up and care may be required. The objective of the gathering was to generate from the participants' personal and professional experiences an overview statement of the group's philosophy of cure and care of survivors of childhood cancer. The 10 points reflect what the group considers essential for the survivors' cure and care.

Aim There has been a welcome trend toward seperate services for young people. This has been in direct response to young people consistently calling for dedicated hospital services for their age group. Despite this trend, specialist cancer units for adolescents and young adults (AYA) only provide care for approximately half of AYA in England, the rest being cared for in child or adult environments. Previous research has described the importance of the environment on experiences of cancer care but this has centred mainly on specialist units only. It is unknown whether this is the same or different for all places of care. This study explored the impact of the physcial healthcare environment on young people and professionals’ social experiences of care and care delivery. Methods A multiple-case study was conducted in 24 hospitals in England between 2014 and 2015. It included: semi-structured interviews with AYA (n=29) and healthcare professionals (n=41); and observations (total=120hrs). Thematic analysis was used to analyse transcripts and field notes. Results Three key themes were apparent in the data relating to the environment: the physical environment; the social environment; and the relationship between the two. The provision of a physical space for socialising was seen to be vital as it enabled AYA to come together, engage in peer support opportunities, socialise with existing peers, and to spend time with their family away from their hospital bed. Although fun, bright décor was described as beneficial, the positive impact of the social space had greater significance. The majority of those in child and adult-focussed care environments reported poor experiences of social interaction when in hospital. Conclusions Poor experiences of AYA receiving care in adult care settings has been identified in previous research. The findings in this present study have compared these experiences against care received in bespoke AYA care settings: advocating for the provision of dedicated spaces which bring young people together. Services must be skilfully developed to create optimal spaces to deliver holistic, age-appropriate care. This will assist the structure, design and commissioning of AYA health services that are fit for purpose.

INTRODUCTION Advances in medical science have enabled many children and young people to survive with the aid of medical technologies. One key technology is long-term ventilation (LTV), defined as ventilatory support lasting at least three months and includes invasive and non-invasive options [1]. LTV can be intended as a bridge therapy to a state where the technology is no longer required, such as to support premature babies with respiratory distress syndrome. Alternatively, LTV can be regarded as lifelong treatment to prevent respiratory insufficiency for people with conditions such as Duchenne Muscular Dystrophy [2]. Regardless of the pathway, whether to initiate LTV is a complex, individual and dynamic decision often made on a case-by-case basis reflective of the heterogeneous nature of these populations [3, 4]. Shared decision-making (SDM) exists as a principle in the United Kingdom (UK) National Health Service (NHS) Constitution that states, ‘Patients, with their families and carers, where appropriate, will be involved and consulted on all decisions about their care and treatment’. [5] Enacting SDM in practice relies firstly on patients and their families receiving the necessary information about the risks and benefits associated with the available treatment options. More so, patients and their families should be given the opportunity to express their preferences and where appropriate, deliberate with healthcare professionals to determine the best treatment plan [6]. The factors that surround a decision to initiate LTV are complex and particularly warrant the existence of SDM principles. For example, there may be considerable uncertainty about the future prognosis of the child. Likewise, the clinical circumstances of children who require LTV means caregivers often must advocate for their child in decisions made about their care. Caregivers must do this while likely contending with their own anxieties and concerns, in environments that are often highly stressful and emotionally draining [7-9]. As such, ensuring caregivers are appropriately informed and supported to be a participant in decisions made is critical to reaching shared agreement on the most appropriate treatment plan for their child. The value of SDM principles in decisions about LTV for children is formerly recognised in practice guidelines[10]. These guidelines allude to the value of practices such as consistent, open, and empathetic dialogue between all parties. Also highlighted is the continued assessment of patient and family understanding of illness and treatment options . Likewise, service specifications for paediatric long-term ventilation published by NHS England state the child and family must be provided the opportunity to discuss LTV with specialists and be given ‘condition specific’ information[11]. Despite the publication of such guidelines, there is minimal empirical evidence or understanding of the application of SDM in the practice of LTV initiation. This is significant because the number of children and young people (0-24 years) on LTV is increasing rapidly, with an estimated 2382 in 2019 in the UK [12]. Consequently, there is a growing need to substantiate existing opinion-based guidance, with empirical evidence and understanding. To address this gap, in this systematic review and qualitative synthesis, we aim to clarify what SDM constitutes in relation to LTV initiation by exploring how children, young people, caregivers, and healthcare professionals practically experience SDM in LTV initiation.

Background: The delivery of optimal care depends on accurate communication between patients and clinicians regarding untoward symptoms. Documentation of patients’ symptoms necessitates reliance on memory, which is often imprecise. We developed an electronic diary (eDiary) for adolescents and young adults (AYAs) with cancer to record symptoms. Objective: The purpose of this paper is to describe the utility of an eDiary designed for AYAs with cancer, including dependability of the mobile application, the reasons for any missing recorded data, patients’ adherence rates to daily symptom queries, and patients’ perceptions of the usefulness and acceptability of symptom data collection via mobile phones. Methods: Our team developed an electronic symptom diary based on interviews conducted with AYAs with cancer and their clinicians. This diary included daily severity ratings of pain, nausea, vomiting, fatigue, and sleep. The occurrence of other selected physical sequelae was assessed daily. Additionally, patients selected descriptors of their mood. A 3-week trial of the eDiary was conducted with 10 AYA cancer patients. Mobile phones with service plans were loaned to patients who were instructed to report their symptoms daily. Patients completed a brief questionnaire and were interviewed to elicit their perceptions of the eDiary and any technical difficulties encountered. Results: Overall adherence to daily symptom reports exceeded 90%. Young people experienced few technical difficulties and reported benefit from daily symptom reports. Symptom occurrence rates were high and considerable inter- and intra-patient variability was noted in symptom and mood reports. Conclusions: We demonstrated the utility of an eDiary that may contribute insight into patients’symptom patterns to promote effective symptom management.

This two-part review provides a comprehensive summary of clinical and research literature on paediatric liver transplantation. Part 2 focuses on the long-term physical consequences and psychological impact of transplantation and critically examines neurobehavioural, sexual development, psychosocial function and overall impact on children’s quality of life. This review highlights the implications for clinical practice in specialist and local services and suggests areas where research is required to improve the lives of children after liver transplantation.

Researchers are responsible for using techniques that allow children to contribute their perspectives in a way that is most suited to their strengths and preferences. The draw and write technique is a method that needs to be used carefully and sensitively if children are to become active participants in revealing their world as they see it. In this article, we explore the issues for the child and researcher of using the draw and write technique as a participatory research methodology. Reflections on the technique are drawn from our experience of using it with children aged 6 to 12 years. This was part of a larger study undertaken to enable children aged 4 to 18 years with a diagnosis of cancer to give their views about hospital care. The participating children's verbal and artistic contributions illustrate how children are able to convey their opinions when there is an enabling climate created.

Though cure from cancer is not guaranteed, children’s chances of survival have increased significantly. As a result the paediatric oncology community is focused on providing appropriate follow-up care to an increasing number of young cancer survivors. How this care should be designed and delivered however remains the centre of ongoing discussion and was the focus of this review. The aims of the review were to (1) gain an understanding of current follow-up practices from studies involving health care professionals, (2) identify and evaluate studies presenting views of survivors, (3) examine commentaries on both the current and future design of long-term follow-up services and (4) evaluate existing follow-up guidelines. Empirical research, commentary papers and published guidelines were reviewed. Twenty-eight papers and five guidelines were analysed. Empirical papers were examined in relation to sample, design, findings and limitations. Commentary papers were assessed in relation to key issues about follow-up care. Guidelines were assessed on how far they were evidence-based, peer-reviewed and involved users in their development. Varying models of care were illustrated, and were dependent upon personnel and centre orientation. Variability in the level and degree to which long-term survivors were followed up was also reported. Inconsistencies in practice were noted. Nonetheless requirements for an effective service were highlighted in the majority of publications, these included communication and information. Although young people and professionals had a shared view on many aspects of follow-up care, these preferences were not consistently mirrored in service provision.

Background To our knowledge, there has yet to be a comprehensive review of how well hospital services are meeting the needs of children and young people (hereafter referred to as children) with learning disability and their families. The extent to which their experiences differ from those of parents of children without learning disability is not known. The views and experiences of children with learning disability are almost non-existent in the literature. Aims To identify the cross-organisational, organisational and individual factors in NHS hospitals that facilitate and prevent children with learning disability and their families receiving equal access to high-quality care and services, and to develop guidance for NHS trusts. Design A four-phase transformative, mixed-methods case study design comparing the experiences of children with and children without learning disability, their parents and health-care staff. Methods Phase 1 comprised interviews with senior managers ( n = 65), content analysis of hospital documents and a staff survey ( n = 2261) across 24 hospitals in England, including all specialist children’s hospitals. Phases 2–4 involved seven of these hospitals. Phase 2 involved (a) interviews and photography with children and their parents ( n = 63), alongside a parent hospital diary and record of safety concerns; (c) hospital staff interviews ( n = 98) and community staff survey ( n = 429); and (d) retrospective mapping of hospital activity. During phase 3, children ( n = 803) and parents ( n = 812) completed satisfaction surveys. Phase 4 involved seeking consultation on the findings. Data analysis A model for mixed-methods data analysis and synthesis was used. Qualitative data were managed and analysed thematically, supported with NVivo (QSR International, Warrington, UK). Quantitative data were analysed using parametric and non-parametric descriptive statistics. Results Nationally, there is considerable uncertainty within hospitals and variation between hospitals in terms of the policies, systems and practices in place specifically for children with learning disability. Staff are struggling to individualise care and are being let down by an inadequate system. Attitudes and assumptions can have a lasting impact on parents and children. The findings serve as a useful guide to trusts about how best to meet the Learning Disability Improvement standards that have been set. Conclusions Safety issues and quality of care affect all children in acute hospitals and their parents, but the impact on children with learning disability and their parents is much greater. Individualising care is key. Our findings suggest that staff may need to undertake training and gain experience to build their skills and knowledge about children with learning disability generally, as well as generate knowledge about the individual child through proactively working in partnership with parents before their child’s admission. The findings also suggest that we may need to address the impact of children’s hospitalisation on parents’ health and well-being. Future work The greatest need is for the development and validation of an instrument for the assessment and management of risk in children with learning disability in hospital. Limitations We cannot say with certainty that the sites selected are representative of all services caring for children with learning disability. Study registration The study has been registered on the National Institute for Health and Care Research (NIHR) Clinical Research Network portfolio as 20461 (phase 1) and 31336 (phases 2–4). Funding This project was funded by the NIHR Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research ; Vol. 10, No. 13. See the NIHR Journals Library website for further project information.

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.

Readers of this journal are well placed to reflect on the highs and lows of receiving grant funding. I am recalling a respected pediatric oncologist offering me encouraging words when in the midst of a grant application: saying “you stand a better chance of getting a grant when you submit to the call than if you didn’t!” Disappointment or success is not my focus here. Rather, my focus is on how research priorities described by healthcare professionals, with and without the inclusion of the voice of their respective patient groups, influences research undertaken in our various cancer populations.

Background Children and young people with learning disabilities experience poor health outcomes and lengthier hospital admissions than those without learning disabilities. No consistently applied, systematic approach exists across the NHS to identify and record this population. This paper describes practices in English hospitals to identify children and young people with learning disabilities. Method Interviews: 65 NHS staff. Questionnaire: 2,261 NHS staff. Conducted across 24 NHS hospitals in England. Results No standardized approach exists to identify children or young people with a learning disability or for this information to be consistently recorded, communicated to relevant parties within a hospital, Trust or across NHS services. Staff reported a reliance on parents to inform them about their child's needs but concerns about “flagging” patients might be a significant barrier. Discussion Without an integrated systematic way across the NHS to identify children with learning disabilities, their individual needs will not be identified.

Background Cancer diagnosis in childhood or adolescence impacts significantly on school attendance, experience and educational outcomes. While there is longstanding recognition in clinical practice that these effects span the whole illness trajectory and continue beyond treatment completion, further clarity is required on the specific barriers and facilitators to education during cancer treatment and beyond, as well as on the experiences of children and adolescents across the full range of education settings (hospital, home, virtual, original school of enrolment), in order to determine which interventions are successful in improving access and experience from their perspective. The aim of this review is to identify what is known from the existing literature about access to and experience of education for children and adolescents with cancer during and post treatment. Methods We have planned a scoping literature review searching the following databases from inception onwards: MEDLINE (Ovid), Embase and Embase Classic, Web of Science Core Collection, Education Resources Index, Sociological Abstracts, APA PsycINFO, SCOPUS, CINAHL Plus, Emcare and The Cochrane Library. In addition, DARE, conference abstracts, key journals, and institutional websites will be searched. Arksey and O’Malley’s six-step process will be followed, including a consultation exercise. Studies, reports and policies from any country providing care and treatment for children and adolescents with cancer published in English will be considered eligible for inclusion. Two reviewers will independently screen all citations, full-text articles and abstract data. A narrative summary of findings will be conducted. Data analysis will involve quantitative (e.g., frequencies) and qualitative (e.g., content and thematic analysis) methods. Discussion This is a timely examination given the increased incidence of childhood cancer, more intensive treatment regimens and improved survival rates for childhood cancer. The inclusion of a substantive consultation exercise with families and professionals will provide an important opportunity to examine the scoping review outputs. Findings will assist the childhood cancer community in developing a comprehensive evidence-based understanding of a significant associated bio-psychosocial impact of cancer diagnosis and treatment and will form the first step towards developing effective interventions and policies to mitigate identified detrimental effects.

Objectives: In England, healthcare policy advocates specialised age-appropriate services for teenagers and young adults (TYA), those aged 13 to 24 years at diagnosis. Specialist Principal Treatment Centres (PTC) provide enhanced TYA age-specific care, although many still receive care in adult or children’s cancer services. We present the first prospective structured analysis of quality of life (QOL) associated with the amount of care received in a TYA-PTC. Design: Longitudinal cohort study. Setting: Hospitals delivering inpatient cancer care in England. Participants: 1114 young people aged 13 to 24 years newly diagnosed with cancer. Intervention: Exposure to the TYA-PTC defined as patients receiving NO-TYA-PTC care with those receiving ALL-TYA-PTC and SOME-TYA-PTC care. Primary outcome: Quality of life measured at five time points: 6, 12, 18, 24 and 36 months after diagnosis. Results: Group mean total QOL improved over time for all patients, but for those receiving NO-TYA-PTC was an average of 5.63 points higher (95% CI 2.77 to 8.49) than in young people receiving SOME-TYA-PTC care, and 4·17 points higher (95% CI 1.07 to 7.28) compared with ALL-TYA-PTC care. Differences were greatest 6 months after diagnosis, reduced over time and did not meet the 8-point level that is proposed to be clinically significant. Young people receiving NO-TYA-PTC care were more likely to have been offered a choice of place of care, be older, from more deprived areas, in work and have less severe disease. However, analyses adjusting for confounding factors did not explain the differences between TYA groups. Conclusions: Receipt of some or all care in a TYA-PTC was associated with lower QOL shortly after cancer diagnosis. The NO-TYA-PTC group had higher QOL 3 years after diagnosis, however those receiving all or some care in a TYA-PTC experienced more rapid QOL improvements. Receipt of some care in a TYA-PTC requires further study.

Effective communication is central to children, young people and their families’ experiences of healthcare. Most patient complaints in developed health care systems result from ineffective communication including: inadequate information provision; not feeling listened to; failure to value patients concerns; and patients not feeling involved in care decisions. Advanced communication skills training is now embedded within cancer care policy in the United Kingdom and now features prominently within cancer education in many countries. Here we share findings from a research evaluation of an Advanced Communication Skills Training program dedicated to health professionals caring for children and young people with cancer. We evaluated participants’ (n = 59) perceptions of the program, impact on their skills, knowledge, competence and confidence. An Appreciative Inquiry design was adopted; data included interviews, pre-post course evaluations, e-mail blog survey and 360-degree reflective work records. The framework approach underpinned data analysis and triangulation of data sets. Key findings highlighted good and poor practice in health professionals’ engagement with children, young people and their families; the purpose of communicating effectively was not always consistent with collaborative working. Attending a program helped participants expand their knowledge of communication theories and strategies. Participants valued using simulated scenarios to develop their skills, and were keen to use their new skills to enhance care delivery. Our emphasis within this evaluation, however remained on what was communicated, when and how, rather than to what effect. The impact of programs such as these must now be evaluated in terms of patient benefit.

Purpose In England, specialist cancer services for adolescents and young adults (young people) aged 15-24 are provided in 13 specialist units, with additional care provided in child and adult cancer units in the region. As a result of specialisation, healthcare professionals (HCP) have refined their competence, to deliver holistic care that has become central to the culture of young people's cancer care. We sought to understand and describe how HCPs developed this competence. Methods We conducted a multiple case study in four regions across England in 24 hospitals. Data were collected through observation of clinical areas, shadowing members of the multidisciplinary team, and semi-structured interviews with young people. Data were analysed thematically and triangulated to draw meaning applicable to a range of contexts. Results Young people (n=29) and HCP (n=41) across 24 different care settings were interviewed. Holistic competence enabled HCPs to deliver care that considered the age-specific needs of young people, including social, emotional and psychological needs, in accordance with their life stage and psychosocial development. Development of holistic competence was facilitated by the following four factors: the environment, the experience

BackgroundChildren undergoing bone marrow transplant (BMT) are at high risk of malnutrition from the side effects of conditioning. Guidelines recommend enteral nutrition first-line with nasogastric tubes the mainstay for provision. Gastrostomies provide an alternative, yet there is limited evidence of their efficacy and safety in BMT. This study aimed to compare feeding tube complications and nutritional outcomes between children fed via gastrostomy versus nasogastric tube during BMT.MethodsA prospective cohort study was conducted at a single UK centre. Children undergoing allogeneic BMT were included. Those receiving CAR-T or first-line parenteral nutrition were excluded. Recruitment ran from April 2021 to April 2022. Tube complications and outcomes were compared between children who used a gastrostomy versus nasogastric tube, from admission to six weeks post-BMT. Data were collected weekly from electronic patient records.ResultsNineteen children comprised the nasogastric group, 24 the gastrostomy (88% recruitment rate). Children were comparable at baseline. In weeks four and six, more children with a nasogastric versus gastrostomy tube developed a tube complication (47.4% v 8.3%, P=0.005; 47.1% v 11.5%, P=0.014 respectively). Major gastrostomy complications comprised 0-20% of episodes each week, minor 80-100%. Inflammation was the most common gastrostomy complication (26.5% of episodes), being pulled out the most common nasogastric (54.7%). No differences were seen in use of parenteral nutrition, weight and mid-upper arm circumference changes between groups, but BMI decreased more in the gastrostomy group from baseline to week four (P=0.007).ConclusionGastrostomy feeding is relatively safe in BMT. Complications occurred frequently but were mostly minor and occurred in similar frequency to nasogastric tubes. Similar efficacy was found between both tubes on various nutritional outcomes. The decision to place a gastrostomy requires careful consideration of the risks, benefits and family preferences. Longer-term follow up and qualitative exploration of family experiences of tube feeding is needed.

Adolescents and young adults (AYA) face individual and social challenges different to other age groups that shape their experience of cancer and the associated psychological distress. This critical review examined the availability of AYA-specific psychosocial interventions in order to assess the impact they have and identify elements that make them successful. Five literature databases were searched for psychosocial intervention studies involving AYAs with cancer, on and off-treatment, aged 10-30 years, published between 1980 and 2016. Eleven out of 42 identified studies were included in the final review after quality assessment. All but two interventions showed positive results on at least one measure of psychosocial wellbeing. A distinctive difference between the supportive needs of those on and off-treatment was noted, and differences in intervention design and delivery formats were identified between the two sub-groups. Analysis of specific intervention characteristics that achieved the successful outcomes was more challenging due to the large variation in outcome measures used. This review demonstrates that psychosocial intervention research for AYA with cancer is increasing and the results show a potential benefit of intervention participation. Further work is needed to validate whether the benefits achieved by intervention participation remain over time.

BackgroundChildren and young people (CYP) with learning disability (LD) and/or autism spectrum condition (ASC) experience more frequent and lengthier hospital admissions than those without, which they and their families can find extremely challenging and anxiety-provoking. Research has uncovered inequities and negative experiences associated with hospitalisation for this population of CYP, which includes the delivery of safe care. Hospital staff have expressed a lack of confidence, capability and capacity to identify and meet the needs of this population, and parents can experience extreme reluctance to leave their child’s bedside.AimTo identify risk factors associated with the delivery of safe hospital care, related to emotional and physical safety, to CYP with LD and/or ASC to inform the development of an instrument for identifying and mitigating these in clinical practice.MethodsA consecutive mixed-methods research design was used, comprising: a scoping literature review; a five-year retrospective review of informal and formal complaints; interviews with parents of CYP with LD and/or ASC and focus groups with healthcare professionals. A parent advisory group and CYP advisory group were established and met virtually throughout. All participants were paid for their time and received feedback on the study results.Results and ConclusionsThe scoping review identified 131 relevant papers, highlighting 11 different risk factors, including sensory/physical environment, procedures and interventions, waiting, sleeping and communication. Data collection with staff and parents built on these findings, revealing two further risk factors associated with equipment and eating and drinking. The review of complaints additionally revealed safety risks associated with hospital transport.Delivery of safe care to CYP with LD and/or ASC and their families is dependent upon identifying the multiple and compounding risk factors associated with being in hospital and delivering reasonable adjustments to mitigate against these. The findings will inform the development of a risk assessment instrument.

Rhabdomyosarcoma is the commonest soft tissue sarcoma in children. Around one-third of children with rhabdomyosarcoma experience relapse or have refractory disease, which is associated with a poor prognosis. This systematic review of early phase studies in pediatric relapsed/refractory rhabdomyosarcoma was conducted to inform future research and provide accurate information to families and clinicians making difficult treatment choices. Nine databases and five trial registries were searched in June 2021. Early phase studies of interventions for disease control in patients under 18 years old with relapsed/refractory rhabdomyosarcoma were eligible. No language/geographic restrictions were applied. Studies conducted after 2000 were included. Survival outcomes, response rates, quality of life and adverse event data were extracted. Screening, data extraction and quality assessment (Downs and Black Checklist) were conducted by two researchers. Owing to heterogeneity in the included studies, narrative synthesis was conducted. Of 16,965 records screened, 129 published studies including over 1100 relapsed/refractory rhabdomyosarcoma patients were eligible. Most studies evaluated systemic therapies. Where reported, 70% of studies reported a median progression-free survival ≤6 months. Objective response rate was 21.6%. Adverse events were mostly hematological. One-hundred and seven trial registry records of 99 studies were also eligible, 63 of which report they are currently recruiting. Study quality was limited by poor and inconsistent reporting. Outcomes for children with relapsed/refractory rhabdomyosarcoma who enroll on early phase studies are poor. Improving reporting quality and consistency would facilitate the synthesis of early phase studies in relapsed/refractory rhabdomyosarcoma (PROSPERO registration: CRD42021266254).

Background Research led by nurses has evolved rapidly over the last 2 decades globally. Assessing the work that has been conducted so far can help the specialty to strategically shape future directions of nurse-led cancer research. Objective The aim of this study was to provide a comprehensive, up-to-date synthesis of all nurse-led cancer research published articles over 20 years. Methods A bibliometric analysis was used. Three databases were used to retrieve nurse-led cancer research publications for the period from January 1, 2004, to March 11, 2022. Results A total of 7043 original articles were retrieved. A significant increase in nurse-led cancer research over the past 2 decades was evident. The United States and United Kingdom were the most productive countries in terms of the number of published articles. Minimal international collaboration was observed among low- or middle-income countries versus high-income countries. Breast cancer, palliative care, and quality of life received the most attention in nurse-led cancer research, followed by education, pain, and communication. Very few publications addressed cancer prevention, breaking bad news, and cancer rehabilitation. Conclusion Areas to consider in the future include more international collaborations on commonly agreed research agendas, capacity building to allow more research beyond the few countries that dominate the publications, and more focus on low- or middle-income countries. Implications for Practice The findings of this study provide direction for future research led by cancer nurses and the areas that warrant further investigation.

Background Previous priority setting exercises have sought to involve children, but in the final reporting, it is evident that few children had been engaged through the process. A primary aim in the Children’s Cancer Priority Setting Partnership was to find out from children what they want research to focus on. We report on our experience to inform methods of engagement with children in future James Lind Alliance Priority Setting Partnerships and similar exercises. Methods We followed the James Lind Alliance process, collecting and shortlisting questions via online surveys with adult survivors of childhood cancer, carers, and professionals, and holding a final workshop. Alongside this, a parallel process to collect and prioritise questions from children was undertaken. We created animations for parents/carers to explain the project and surveys to children, gathered questions via online surveys and held a workshop with children to identify their priorities. Results Sixty-one children and young people with cancer and 10 siblings, aged 3 to 21 years, submitted 252 potential questions/topics via the surveys. Submissions were refined into 24 summary questions. These questions were discussed at a workshop with eight children; they also added more questions on topics of importance to them. Workshop participants prioritised the Top 5 questions; top priority was, ‘How can we make being in hospital a better experience for children and young people? (like having better food, internet, toys, and open visiting so other family members can be more involved in the child’s care)’. The Top 5 also included cancer prevention, treatments closer to home, early diagnosis, and emotional support. These questions were taken to the final workshop at which the Top 10 priorities were decided, all five children’s priorities were reflected in the final Top 10. Conclusions: We have demonstrated that it is possible to successfully involve children directly in setting priorities for future research. Future priority setting exercises on topics relevant to children, should seek to include their views. The Children’s Cancer Top 10 priorities reflect the voices of children and should inform the funding of future research.

This article aims to share critical debate on undertaking interviews with children in the home setting and draws on the authors' extensive research fieldwork. The article focuses on three key processes: planning entry to the child's home, conducting the interviews and exiting the field. In planning entry, we include children's engagement and issues of researcher gender. In conducting the interviews, we consider issues such as the balance of power, the importance of building a rapport, the voluntary nature of consent and the need for a flexible interview structure. Finally, we address exiting from the child's home with sensitivity at the end of the interview and/or research study. Undertaking research in the child's home provides a known and familiar territory for the child, but it means that the researcher faces a number of challenges that require solutions whilst they are a guest in a child's home.

Objectives To provide international consensus on the competencies required by healthcare professionals in order to provide specialist care for teenagers and young adults (TYA) with cancer. Design Modified e-Delphi survey. Setting International, multicentre study. Participants Experts were defined as professionals having worked in TYA cancer care for more than 12 months. They were identified through publications and professional organisations. Methods Round 1, developed from a previous qualitative study, included 87 closed-ended questions with responses on a nine-point Likert scale and further open-ended responses to identify other skills, knowledge and attitudes. Round 2 contained only items with no consensus in round 1 and suggestions of additional items of competency. Consensus was defined as a median score ranging from 7 to 9 and strength of agreement using mean absolute deviation of the median. Results A total of 179 registered to be members of the expert panel; valid responses were available from 158 (88%) in round 1 and 136/158 (86%) in round 2. The majority of participants were nurses (35%) or doctors (39%) from Europe (55%) or North America (35%). All 87 items in round 1 reached consensus with an additional 15 items identified for round 2, which also reached consensus. The strength of agreement was mostly high for statements. The areas of competence rated most important were agreed to be: ‘Identify the impact of disease on young people's life’ (skill), ‘Know about side effects of treatment and how this might be different to those experienced by children or older adults’ (knowledge), ‘Honesty’ (attitude) and ‘Listen to young people's concerns’ (aspect of communication). Conclusions Given the high degree of consensus, this list of competencies should influence education curriculum, professional development and inform workforce planning. Variation in strength of agreement for some competencies between professional groups should be explored further in pursuit of effective multidisciplinary team working.

Introduction: The challenges of achieving timely cancer diagnosis in adolescents and young adults are recognised. However, contributing factors and associated clinical and psychosocial outcomes are poorly understood. Areas covered: We present a scoping review of existing evidence into time intervals to diagnosis and potential mechanisms influencing the identification of cancer symptoms and impact on a timely diagnosis. Charting data using Walters ‘pathways to treatment’ we summarise the diagnostic pathway into four interval categories: appraisal, help-seeking, diagnostic, and pre-treatment, and illustrate where evidence exists and where unanswered questions remain. Expert commentary: Whilst the research base has expanded over the last decade in cancer care there continues to be limited research that reveals the complexity of the timeliness of diagnosis in this population. There are unique issues facing this age group in terms of rarity of cancer, complexity of symptoms and problems with healthcare system access that create a constellation of challenges. We offer explanations for diagnostic difficulties in this age group, and explain how, with the limited available evidence, we are still seeking solutions to what is a uniquely complex problem.

This ethnographic study sought parent, patient and staff views about the needs of children and young people with learning disability and their families during hospitalization. Reported here are data from 27 staff. The need for individualized care was identified, based on gaining appropriate experience and training, identifying the population, focussing on the "little things", creating a safe, familiar environment and accessing and using appropriate resources. Parents played a central role in staff's delivery of individualized care. A lack of staff experience, knowledge and communication about learning disability can mean they rely on parent's input rather than forming a true partnership with them.

Cancer-related fatigue is the most prevalent and distressing symptom experienced by adolescents and young adults (AYAs). An electronic survey was undertaken to ascertain current fatigue management and perceptions of its effectiveness. 85% of responders (68/80) experienced fatigue, and it was worse more than one year after cancer treatment ended, compared to less than one year (p=0.007). 41% received no fatigue management. Although advice to exercise was the most frequent intervention, the greatest impact of fatigue was on the ability to exercise and most did not find exercise advice helpful. Early intervention is warranted, supporting AYAs to persevere with increasing activity.

To identify and critique literature on the adolescent lived experience of chronic illness; describe the lived experience; and to make recommendations for clinical practice. Young people with chronic illness have the same developmental issues as those who are healthy. However, development can be disrupted by treatment and repeated hospitalisation. While the physical consequences of chronic illness on development have been established, the subjective personal experience is less known. Literature review. Electronic databases and hand searches were made of the literature published between January 1990-September 2007. Literature was eligible for inclusion if it involved adolescents between 10-19 years, and published in English and used qualitative methods of data collection. Methodological quality was assessed using the criteria described by Cesario et al. [Journal of Obstetrics, Gynaecology and Neonatal Nursing 31 (2002) 31]. Twenty studies were identified involving young people with a wide variety of chronic illnesses. The study quality was variable, however, generally the majority was assessed as being good or fair. Seven common themes were found between the identified studies: developing and maintaining friendships; being normal/getting on with life; the importance of family; attitude to treatment; experiences of school; relationship with the healthcare professionals; and the future. As there was commonality in themes between studies strategies to lessen the burden of chronic illness during adolescence do not necessarily need to be disease specific. Nurses need to focus on treating the young person rather than their illness.

Objective: To assess the variation in the current UK management strategies for the treatment of febrile neutropenia in childhood. Design and setting: A postal survey of all 21 United Kingdom Children’s Cancer Study Group (UKCCSG) centres assessing and collating local policies, protocols or guidelines relating to the management of febrile neutropenia. Further direct contact was undertaken to clarify any uncertainties. Results: All 21 centres provided information. The policies used to manage febrile neutropenia in the centres around the UK vary in almost every aspect of management. Definitions of fever ranged from a persistent temperature of >37.5°C to a single reading of >39°C. Neutropenia was inconsistently defined as an absolute neutrophil count of

Background The maintenance of an adequate nutritional intake is vital for the child or young person undergoing treatment for cancer. Inability to maintain nutrition can lead to poor tolerance of treatment, increased risk of infectious complications and a potential poorer overall outcome. Good nutritional support is vital however there does not appear to be a national or consistent approach to either nutritional support or assessment. Purpose The Paediatric Oncology Nurses Forum of the Royal College of Nursing and the Paediatric Oncology Dieticians Interest Group surveyed practice in the 21 Childrens Cancer and Leukaemia Group Centres in the United Kingdom and Ireland with the express aim of reviewing current practice as a first stage towards developing national guidance for nutritional management. Methods and sample Questionnaires designed to review nutritional assessment and nutritional interventions were distributed to both a nurse and dietician in each CCLG centre. The results were analysed using descriptive statistics. Results There was a 100% return rate from nurses and 66% from dieticians. The results showed an inconsistent approach in both assessment methods and approaches to nutritional intervention for this group of patients. Conclusion It is recognised that there is a need to adequately assess and provide appropriate nutrition for children and young people receiving cancer therapies. This survey highlights the inconsistencies in practice today as well as the need for consistent and useful guidance especially in the area of nutritional assessment and management of potential malnutrition.

The reasons why teenagers and young adults (TYA) with cancer do, or do not, participate in clinical trials is not wholly understood. We explored the perceptions and experiences of young people with bone cancer, and health professionals involved in their care, with regard to participation in two clinical trials. We conducted semi-structured interviews using narrative inquiry with 21 young people aged 15-24 years and 18 health professionals. New understandings emerged about perceptions of, and factors that influence participation in, clinical trials. These include perceptions about the importance and design of the clinical trial, communicating with young people in an age-specific manner, using language young people are comfortable with, support from family, peers and specialists in teenage and young adult cancer care. We conclude that addressing these factors may increase acceptability of clinical trials and the trial design for TYA with cancer and ultimately improve their participation. Qualitative research has an important role in making explicit the perceptions and practices that ensure trials are patient-centred, appropriate and communicated effectively to TYA. Translating knowledge gained into routine practice, will go some way in ensuring that the disparities affecting this population are more fully understood.

Objective: The objective of this scoping review is to identify and map support interventions provided during palliative care to families with dependent children when a parent has a terminal illness. Introduction: For dependent children, losing a parent through terminal illness can be one of the most traumatic experiences they will face. Without age-appropriate information and support, parental death can lead to unresolved grief, post-traumatic stress, and longer-term negative social, emotional, educational, and behavioral consequences. Support from health care professionals is provided, but challenges within hospice and community palliative care mean the needs of dependent children may not be addressed. Greater emphasis is often placed on children's and families’ bereavement needs as opposed to their pre-bereavement needs. The status of pre-bereavement support in palliative care for these families has not been documented. Inclusion criteria: We will include studies of support interventions provided to families with dependent children when a parent has a terminal illness that are delivered during palliative care and in settings including, but not limited to, hospices, hospitals, and the community (including family and care homes). Empirical, peer-reviewed studies based on qualitative, quantitative, or mixed methods data, and gray literature, reporting any stage of intervention development will be included. Methods: This review will follow the JBI approach for scoping reviews. Multiple database searches will be conducted. Two authors will independently review full-text articles and extract data. Interventions will be mapped in terms of characteristics, evaluation methods, and implementation challenges. Data will be presented in tables, diagrammatic form, and narrative summary.

Background There is evidence that the process of transition from paediatric (child) to adult health services is often associated with deterioration in the health of adolescents with chronic conditions.Transitional care is the term used to describe services that seek to bridge this care gap. It has been defined as ‘the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-oriented health care systems’. In order to develop appropriate services for adolescents, evidence of what works and what factors act as barriers and facilitators of effective interventions is needed. Objectives To evaluate the effectiveness of interventions designed to improve the transition of care for adolescents from paediatric to adult health services. Search methods We searched The Cochrane Central Register of Controlled Trials 2015, Issue 1, (including the Cochrane Effective Practice and Organisation of Care Group Specialised Register), MEDLINE, EMBASE, PsycINFO, and Web of Knowledge to 19 June 2015. We also searched reference lists of included studies and relevant reviews, and contacted experts and study authors for additional studies. Selection criteria We considered randomised controlled trials (RCTs), controlled before- and after-studies (CBAs), and interrupted time-series studies (ITSs) that evaluated the effectiveness of any intervention (care model or clinical pathway), that aimed to improve the transition of care for adolescents from paediatric to adult health services. We considered adolescents with any chronic condition that required ongoing clinical care, who were leaving paediatric services and going on to receive services in adult healthcare units, and their families. Participating providers included all health professionals responsible for the care of young people.

Objective was to update a clinical practice guideline (CPG) for the management of fatigue in children and adolescents with cancer or pediatric hematopoietic cell transplant recipients. We reconvened a multi-disciplinary and multi-national panel. While the previous 2018 CPG evaluated adult and pediatric randomized controlled trials (RCTs) to manage fatigue, this 2023 update revised previous recommendations based only on pediatric RCTs. Twenty RCTs were included in the updated systematic review. Physical activity significantly reduced fatigue (standardized mean difference −0.44, 95% confidence interval −0.64 to −0.24; n = 8 RCTs). Using the 2018 recommendations as a basis, the panel continued to make strong recommendations to use physical activity, and to offer relaxation, mindfulness or both, to manage fatigue in pediatric patients. Cognitive or cognitive behavioral therapies may be offered. Pharmacological approaches should not be routinely used. The panel made a new good practice statement to routinely assess for fatigue, ideally using a validated scale.

The process of transitioning young people from children’s or adolescents’ health services into adults’ services is a crucial time in the lives and health of young people, and has been reported to be disjointed rather than a process of preparation in which they are involved. Such transitions not only fail to meet the needs of young people and families at this time of significant change, but they may also result in a deterioration in health, or disengagement with services, which can have deleterious long-term consequences. Despite the wealth of literature on this topic, there has yet to be a focus on what works for whom, in what circumstances, how and why it works, in relation to all young people transitioning from children’s into adults’ services, which this realist synthesis aims to address.

Background When cancer occurs in teenagers and young adults, the impact is far beyond the physical disease and treatment burden. The effect on psychological, social, educational and other normal development can be profound. In addition, outcomes including improvements in survival and participation in clinical trials are poorer than in younger children and older adults with similar cancers. These unique circumstances have driven the development of care models specifically for teenagers and young adults with cancer, often focused on a dedicated purpose-designed patient environments supported by a multidisciplinary team with expertise in the needs of teenagers and young adults. In England, this is commissioned by NHS England and delivered through 13 principal treatment centres. There is a lack of evaluation that identifies the key components of specialist care for teenagers and young adults, and any improvement in outcomes and costs associated with it. Objective To determine whether or not specialist services for teenagers and young adults with cancer add value. Design A series of multiple-methods studies centred on a prospective longitudinal cohort of teenagers and young adults who were newly diagnosed with cancer. Settings Multiple settings, including an international Delphi study of health-care professionals, qualitative observation in specialist services for teenagers and young adults, and NHS trusts. Participants A total of 158 international teenage and young adult experts, 42 health-care professionals from across England, 1143 teenagers and young adults, and 518 caregivers. Main outcome measures The main outcomes were specific to each project: key areas of competence for the Delphi survey; culture of teenagers and young adults care in the case study; and unmet needs from the caregiver survey. The primary outcome for the cohort participants was quality of life and the cost to the NHS and patients in the health economic evaluation. Data sources Multiple sources were used, including responses from health-care professionals through a Delphi survey and face-to-face interviews, interview data from teenagers and young adults, the BRIGHTLIGHT survey to collect patient-reported data, patient-completed cost records, hospital clinical records, routinely collected NHS data and responses from primary caregivers. Results Competencies associated with specialist care for teenagers and young adults were identified from a Delphi study. The key to developing a culture of teenage and young adult care was time and commitment. An exposure variable, the teenagers and young adults Cancer Specialism Scale, was derived, allowing categorisation of patients to three groups, which were defined by the time spent in a principal treatment centre: SOME (some care in a principal treatment centre for teenagers and young adults, and the rest of their care in either a children’s or an adult cancer unit), ALL (all care in a principal treatment centre for teenagers and young adults) or NONE (no care in a principal treatment centre for teenagers and young adults). The cohort study showed that the NONE group was associated with superior quality of life, survival and health status from 6 months to 3 years after diagnosis. The ALL group was associated with faster rates of quality-of-life improvement from 6 months to 3 years after diagnosis. The SOME group was associated with poorer quality of life and slower improvement in quality of life over time. Economic analysis revealed that NHS costs and travel costs were similar between the NONE and ALL groups. The ALL group had greater out-of-pocket expenses, and the SOME group was associated with greater NHS costs and greater expense for patients. However, if caregivers had access to a principal treatment centre for teenagers and young adults (i.e. in the ALL or SOME groups), then they had fewer unmet support and information needs. Limitations Our definition of exposure to specialist care using Hospital Episode Statistics-determined time spent in hospital was insufficient to capture the detail of episodes or account for the variation in specialist services. Quality of life was measured first at 6 months, but an earlier measure may have shown different baselines. Conclusions We could not determine the added value of specialist cancer care for teenagers and young adults as defined using the teenage and young adult Cancer Specialism Scale and using quality of life as a primary end point. A group of patients (i.e. those defined as the SOME group) appeared to be less advantaged across a range of outcomes. There was variation in the extent to which principal treatment centres for teenagers and young adults were established, and the case study indicated that the culture of teenagers and young adults care required time to develop and embed. It will therefore be important to establish whether or not the evolution in services since 2012–14, when the cohort was recruited, improves quality of life and other patient-reported and clinical outcomes. Future work A determination of whether or not the SOME group has similar or improved quality of life and other patient-reported and clinical outcomes in current teenage and young adult service delivery is essential if principal treatment centres for teenagers and young adults are being commissioned to provide ‘joint care’ models with other providers. Funding This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 9, No. 12. See the NIHR Journals Library website for further project information.

Cancer in Adolescents and Young Adults is a practical guide to cancer care in adolescents and young adults. It considers the impact of diagnosis on individuals, and their families, as well as examining the impact on the health professionals responsible for their care. There are sections focussing on the adolescent's experience of cancer and ongoing care needs during treatment, and on life after cancer, including rehabilitation and palliative care. • Builds on the forthcoming NICE guidelines on Supportive Cancer Care for Children & Young People, and recent Department of Health guidelines & policy initiatives • Adopts an integrated inter-professional approach • Contains evidence-based contributions from leading professionals in cancer care Cancer in Adolescents and Young Adults is an essential resource for all those involved with the provision of care and support for adolescents and young adults with cancer. About the Editors: Dr Daniel Kelly is Reader in Cancer & Palliative Care, Middlesex University, London. Dr Faith Gibson is Senior Lecturer in Children's Nursing Research, Institute of Child Health, Great Ormond Street Hospital and King's College London.

Background: A reliable and valid instrument that accurately measures resilience is crucial for the development of interventions to enhance the resilience of adolescents and promote their positive mental well-being. However, there is a lack of adolescent resilience assessment tools with good psychometric properties suitable for use with Hong Kong participants. This study aimed to evaluate the psychometric properties of the traditional Chinese version of the Resilience Scale-14. Methods: Between October 2017 and January 2018, a stratified random sample of 1816 Grade 7 (aged 11–15 years) students from all 18 districts of Hong Kong were invited to participate in the study. Subjects were asked to respond to the traditional Chinese version of the Resilience Scale-14, the Center for Epidemiologic Studies Depression Scale for children, and Rosenberg’s Self-Esteem Scale. The psychometric properties, including the internal consistency, content validity, convergent and discriminant validity, exploratory and confirmatory factor analyses, and test–retest reliability of the Resilience Scale-14 were assessed. Results: The translated scale demonstrated good internal consistency and test–retest reliability, excellent content validity, and appropriate convergent and discriminant validity. The results of the confirmatory factor analysis supported the two-factor structure of the traditional Chinese version of the Resilience Scale-14. Conclusions: Results suggest that the translated scale is a reliable and valid tool to assess the resilience of young Hong Kong Chinese adolescents. Healthcare professionals could use the newly translated scale to assess resilience levels among Hong Kong adolescents and develop interventions that can help them combat mental health problems and lead healthier lives.

Background: Unintentional injuries are a leading cause of preventable death and a major cause of ill health and disability in children under five years of age. A health promotion mobile phone application, ‘Grow up Safely’, was developed to support parents and carers in reducing unintentional injuries in this population of children. Methods: A prototype of the mobile application was developed to deliver health education on unintentional injury prevention linked to stages of child development. In order to explore the usability of the app and refine its content, three focus groups were conducted with 15 mothers. Data were analysed using thematic analysis. Results: The majority of participants reported previous use of health apps, mainly related to pregnancy, and recommended by health professionals. The app was considered user‐friendly and easy to navigate. Participants in two focus groups found the app informative, offered new information and they would consider using it. Participants in the ‘young mum's’ group considered the advice to be ‘common sense’, but found the language too complex. All participants commented that further development of push‐out notifications and endorsement by a reputable source would increase their engagement with the app. Conclusion: The ‘Grow Up Safely’ mobile phone app, aimed at reducing unintentional injuries in children under five, was supported by mothers as a health promotion app. They would consider downloading it, particularly if recommended by a health professional or endorsed by a reputable organisation. Further development is planned with push‐out notifications and wider feasibility testing to engage targeted groups, such as young mothers, fathers and other carers.

Purpose The aim of this study is to review current oral care practices in children being treated for cancer against audit criteria derived from national guidelines, and to compare findings with data from a baseline survey carried out in 2002 prior to implementation of the national guidelines. Methods A telephone survey was carried out of all 21 haematology–oncology (HO) centres and seven bone marrow transplant (BMT) units within the UK Children’s Cancer Study Group focusing on key audit themes of: availability of evidence-based guidelines, oral and dental care prior to and during cancer treatment, oral assessment, prevention and treatment of oral complications. Results The national guidelines were used in 19/25 (76%) settings that employed written guidelines. There was little variation in advice given to patients/parents on basic oral hygiene, and this advice was commensurate with guideline recommendations. Inconsistencies in oral care assessment, reported at baseline, remained commonplace across the majority of settings. In only 10/21 HO centres, it was usual practice for children to undergo dental assessment prior to commencing cancer treatment, indicating no improvement since baseline survey. Few therapies outside of the guideline recommendations were being used. The routine use of preventive nystatin, not recommended in the guideline, had significantly decreased from baseline (by 40%). Conclusions Uptake of national guidelines by HO/BMT settings was good however certain oral care practices fell short of the guideline recommendations. Routine dental checks need to be embedded in practice. Further consideration is needed as to how oral assessment might be used more effectively in informing treatment.

The paediatric oncology community is focused on providing appropriate care to survivors of childhood cancer, given that despite increases in survival rates it is estimated that 60% will have one or more problems related to their disease or treatment. Agreement and consistency in how follow-up for this group of young people should be designed and delivered has not yet been reached and rarely have young people been asked to contribute to this discussion. The study aimed to find out what young people who are receiving long-term follow-up for childhood cancer would like from their follow-up service. It aimed to illuminate the dimensions of care valued by young people as well as make explicit to professionals health care needs that must be met to provide optimum care into their adult life. The emphasis was on qualitative, participatory methods using reflexive and responsive approaches to give primacy to the voice of participants. Data were generated through a series of workshops, interviews and questionnaires. Forty young people (12 male: 30% and 28 female: 70%), participated in the study. Preliminary analysis yielded a descriptive typology that could serve as a basis for classifying and clarifying health care needs: defined as what the young people in this study wanted from a follow-up service. Five categories of health care need were identified: (i) need for a positive relationship with health care professionals; (ii) need for information; (iii) need for communication; (iv) need for parents to be supported; (v) need for health care professionals to have appropriate knowledge. Young people in this study were clear about the structure and process of a service that would meet their needs. Assembling data into a typology of health care need presents those delivering and commissioning services a tangible indicator of outcome that can be confidently described as what young people want from any current or future model of follow-up service.

PURPOSE OF THE RESEARCH: Despite decision-making featuring throughout the trajectory of cancer care, children's participation in decision-making remains an area much under-researched and complicated by conflicting opinions. This study explored children's participation in shared decision-making (SDM) from multiple perspectives from one haematology/oncology unit in Ireland. METHODS AND SAMPLE: Qualitative research design was used to explore participants' experiences of children's decision-making. Interviews were conducted with children(1) aged 7-16 years (n = 20), their parents (n = 22) and healthcare professionals (n = 40). Data were managed with the aid of NVivo (version 8). KEY RESULTS: Parents and children's roles in decision-making were significantly influenced by the seriousness of the illness. Cancer is a life-threatening illness and so the treatment 'had to be done'. Children were not involved in major decisions (treatment decisions) as refusal was not an option. They were generally involved in minor decisions (choices about care delivery) with the purpose of gaining their cooperation, making treatment more palatable, giving back a sense of control and building trusting relationships. These choices were termed 'small' decisions that would not compromise the child's welfare. Some adolescents were aware that choices were not 'real' decisions since they were not allowed to refuse and expressed feelings of frustration. CONCLUSIONS: Healthcare professionals and parents controlled the process of SDM and the children's accounts revealed that they held a minimal role. Children appeared content that adults held responsibility for the major treatment decisions. However, they desired and valued receiving information, voicing their preferences and choosing how treatments were administered to them.

Purpose To review the qualitative literature on experiences of and preferences for end of life care of people with cancer aged 16-40 years (young adults) and their informal carers. Methods A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods programme guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Results Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus and sample but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care whilst negative experiences were loss of ‘self’ and non-facilitative services and environment. Preferences included a family centred approach to care, honest conversations about end of life and facilitating normality. Conclusions There is little evidence focused on the end of life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore it is difficult to identify age-specific issues clearly. From this review, we suggest that supportive interventions and education are needed to facilitate open and honest communication at an appropriate level with young people. Future research should focus on age-specific evidence about the end of life experiences and preference for young adults with cancer and their informal carers.

For some time now nurses have sought to refine and develop their roles, with paediatric oncology nurses being swept along with this tide of change. Although the voice of paediatric oncology nursing is heard infrequently in the nursing literature, within the specialty nurses have continued to keep abreast of issues and remain concerned by the speed of development and implementation of new roles in clinical practice, as well as the philosophical debates surrounding these.The steering group of the Paediatric Oncology Nurses Forum in the UK is working towards developing a framework for practice through various working parties and debates at conference events.This paper intends to present our ideas so far, making explicit ongoing and future activities which contribute to advancing clinical practice. Implicit in this process is the recognition that the interests of children, teenagers and their families, and the quality of patient care, remain central to service provision. However, it may be that, as Manley (1996) suggests,'aspects of advanced practice may be intangible and that it is about responding autonomously in ways perceived necessary to develop the service'. It is the aim of the Paediatric Oncology Nurses Forum to produce a framework that would enable nurses and organizations to confidently devise and develop roles that are patient and service-orientated. Bereits seit einiger Zeit haben Krankenschwestern versucht, ihre Rollen zu verfeinern und zu entwickein, wobei die onkologische Kinderkrankenpflege von dieser Änderungswelle mitgerissen wurde. Obwohl die Stimme der onkologischen Kinderkrankenpflege In der Pflegeliteratur nur gelegentlich zu vernehmen ist, sind die Pflegenden innerhalb der eigenen Fachrichtung auf der Höhe der Zeit geblieben und haben sowohl die Geschwindigkeit mit der die neuen Rollen der Pflegepraxis entwickelt und eingeführt wurden als auch die damit zusammenhängenden philosophischen Dis kussionen im Blick behalten. Die Steuerungsgruppe des onkologischen Kinderkrankenpflegeforums in Groβbritannien arbeltet inverschiedenen Arbeitsgruppen und auf Konferenzdebatten daran, einen Rahmen für die Pflegepraxis zu entwickein. Diese Arbeit will unsere bisherigen Ideen vorstellen und verdeutichen, welche aktuellen und zukünftigen Entwicklungen dazu beitragen, die Pflegepraxis weiterzuentwickeln. In diesem Prozeβ ist die Erkenntnis impliziert, daβ die Interessen von Kindem, Jugendlichen und ihren Angehörigen sowie die Pflegequalität zentrale Aspekte des Leistungsangebots bleiben. Trotzdem kann es wie Manley (1996) meint, sein, daβ. Aspekte der fortschrittichen Pflegepraxis nur schwer fassbar sein könnten und daβ es darauf ankommt, selbständig so zu reagieren, wie man es zur Weiterentwicklung des Pflegeangebots für nötig hält”. Es 1st das Ziel des onkolgischen Krankenpflegeforums einen Rahmen zu entwickeln, der Pflegende und Organisationen dazu befähigt, zuversichtlich Rollen zu konstruieren und zu entwickeln, die sowohl patienten-als such serviceorientiert sind. Desde hace algun tiempe. las enfÉrmeras se han visto obligadas a deflnir y a desarrollar de nuevo sus funciones. en las que la enferineria pediätrica oncologica se ha visto envuelta en una ola de cambios. Aunque la voz de las enfermeras oncologicas pediátricas ha sido poeo oida entre los articulos escritos por enfermeria; estas enfermeras especialistas ban continuado manteniéndose al corriente de la importancia de tener unos objectivos y han continuado recordando la recesidad de desarrollo y realización de nuevas funciones en la practica clinica asi como. de los aspectos psicológicos que los rodean. Lod profesionales que dirigen et Paediatric Oncology Nursing Forum en et Reino Unido estan trabajando para desarrollar un programa para la practica y lo está haciendo a través de reuniones informales de trabajo y debates en conferencias, congresos. Este articulo intenta Ilevar las ideas de enfemeria may lejos, hacienda explicitas las futuras actividades que se van a Ilevar a cabo a cabo las cuales contribuirán a dar un avance en la práctica clinica. Implicito cn este proceso es reconoeer cuales son los intereses de los mios, adolescentes y sus familias, y de reconocer la importancia de una buena calidad de cuidados. Sin embargo, puede ser, que como sugiere Manley (1996) cierfos aspectos de la practica avanzada puedan ser inalcanzables y que a esto se debe responder de una mancra autonoma, que se considere necesaria para desarrollar et programa. El objectivo de et grupo de las enfermeras oncologicas pediátricas (Paediatric Oncology Nursing Forum) es producir unas guias de trabajo y un programa que haga posible trabajar de una formá confidencial a enfermeria y a la organización para desemperiar unas funciones que estén orientadas al personal y al paciente.

BACKGROUND: Little is known about whether children's cancer services actually meet children's needs, as the majority of previous research has sought the views of parents as proxies. OBJECTIVES: To explore children's and young peoples' views of cancer care and to present a conceptual model of communication and information sharing. SETTINGS: Three Principal Cancer Treatment centres in the United Kingdom. PARTICIPANTS: Thirty-eight participants at different stages of the cancer journey (e.g. on treatment, near end of treatment, up to 18 months following treatment) were grouped for data collection by age: young children (4-5 years), older children (6-12 years) and young people (13-19 years). METHODS: Data were collected concurrently over 6 months using age-appropriate, participatory-based techniques. Techniques included play and puppets, the draw and write method, interviews and an activities day. RESULTS: Some findings confirmed previously reported issues, such as, young children's inabilities to voice their preferences, and the importance of familiar environments and parental support for all ages. New findings suggested children worry about the permanence of symptoms, and older children are unhappy about their parents leading communications with health professionals. As communication and information sharing featured as an area in which children's and young people's preferences changed most dramatically, we propose a conceptual model of communication roles of patients, their parents, and health professionals to illuminate communication patterns. The model suggests children (aged 4-12 years) reside in the background of information sharing with health professionals until they gain autonomy as young people (around age 13). They then move into the foreground, and their parents transition into a supportive background role. Reviewing this model may help younger children realise their abilities to voice their preferences and older children to move into the foreground. Parents and professionals, in turn, can learn to develop in their supportive background roles. We encourage further testing of the model to define roles within relevant contexts. CONCLUSIONS: Overall, this study offers a perspective on the needs and preferences of children and young people receiving cancer care. Differences across ages were more striking with reference to preferences for communication. These differences are highly relevant to the way we communicate information to children and young people.

Families and healthcare professionals caring for a sick or disabled child without a definitive diagnosis face unique challenges, particularly in relation to managing uncertainty, access to healthcare and coordination of care. There has been little research exploring the impact this has on families, their support needs or their experience of health services. This qualitative interview study included interviews with 14 mothers of children with undiagnosed genetic conditions. Transcripts were analysed using thematic analysis. Four themes emerged, uncovering overlapping patterns in the data: (1) living with complexity amidst uncertainty-'We don't know what tomorrow will bring'; (2) parental role-'I do everything I can'; (3) parental role-'Not coping is not an option'; and (4) support needs-'There's lots of help that just isn't out there'. The results clearly demonstrate the stresses faced when caring for a child with an undiagnosed genetic condition. Some themes are shared with the experience of other families caring for children with complex needs. However, parents were doing all they could for their child in the context of a life of uncertainty, with the absence of a clear diagnosis clearly causing additional stress that impacted on the whole family. Impact on their emotional and physical well-being was evident; they described times of feeling stressed, worried and anxious. They were confused due to being overloaded with information and frustrated by a lack of care coordination. Parents did not appear to prioritize their own well-being and held back their emotions to protect themselves and others. As a result, they had many unmet needs, particularly relating to emotional support.

Brain and central nervous system tumours are the most common solid tumour across 153 cancer registries world-wide for those aged 0-19 years1. They account for 15% of adolescent and young adult (AYA) cancers aged 15-25 years.2 AYAs aged 15 to 39 have the highest rates of survival following a brain tumour, which when combined with the incidence rate in this age group, indicates this population has the largest proportion of survivors predisposed to late effects. More than half of survivors of a brain tumour have ongoing symptoms that can have a detrimental impact on an individuals’ ability to attain common milestones reached during adolescence.3 Failure to achieve these milestones highlights the susceptible nature of adolescence and the vulnerability of those severely affected by their diagnosis and treatment. Lower rates of marriage and employment, social isolation and limits on reaching independence are a consequence of late effects from disease and treatment.3-6 The aim of support for cancer survivors is to maximize quality of life by aiding a return to normality and independence as soon as possible while minimizing the negative effects associated with cancer and its treatment.7 Recommendations for follow-up services advocate and incentivize implementation of personalized packages of follow-up care comprising of: well-being events aimed to support self-management of symptoms; rapid access to a cancer centre when necessary; completion of holistic needs assessments; and access to health and wellbeing information.8 In addition, survivors of a brain tumour should be made aware that lifestyle choices may impact on the severity and management of late effects. Therefore, follow-up services need to acknowledge typical behavior traits displayed in this age group: immature decision making and not placing emphasis on the long-term consequences of decisions.9 A better understanding of all aspects of the survivorship experience of AYAs is required to ensure follow-up services are able to meet the needs of this population. Systematic reviews examining quality of life and experiences of brain tumour survivors mainly focus on adult10-11 or paediatric populations.12-13 This meta-ethnography aims to add to existing knowledge by aggregating qualitative data and interpretively synthesizing this to generate new concepts regarding all aspects of the survivorship experience. In order to identify areas of unmet need for young people aged 15 to 39 years, the focus of this review is on quality of life, family functioning, experiences of physical and cognitive late effects and social functioning, including the perspectives of parents, partners and caregivers.

Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterised by progressive and permanent physical and cognitive decline. The impact of such conditions on families, and notably on siblings, has not yet been described or documented. This paper presents data from a UK-wide study that sought to understand the family experience of supporting a child with the rare degenerative LLCs of MPS and Batten disease. The aim of this paper is to report sibling experiences related to these rare degenerative and progressive conditions, in order to inform the future development of supportive interventions. Eight siblings of children with MPS (n = 7) and Batten Disease (n = 1) participated in semi-structured qualitative interviews. A card sort technique was utilised to support and engage the children. Siblings are clearly impacted emotionally, pragmatically and relationally by the ill health of another child in the family. The data indicate four key themes which demonstrate impacts on siblings: perceptions of the condition and its symptoms, impact on daily life, emotional consequences and ways of coping. Siblings often had considerable knowledge of the condition and took on important roles in symptom management. However, these experiences were in the context of managing relationships within the family (often protecting parents from an awareness of how much they knew) and relationships at school (including distraction from learning and being bullied by peers). The data highlight how sibling experiences are generated through a combination of negative disability discourses and support through peers and family members. The data indicate how these features shift as a consequence of witnessing the advancement of their brother's or sister's condition and the emotional sequelae of disease progression. Exploration of siblings' experiences of living with such rare progressive and degenerative LLCs suggest the focus of interventions to support this group should address their emotional health and ways to overcome isolation and build connections with other siblings who share their unique experiences. Critically, the data suggest that sibling support should be cognisant of the trajectory of the illness as well as the family, school and peer relational contexts that siblings inhabit.

Background: Paediatric Rheumatology is a term that encompasses over 80 conditions affecting different organs and systems. Children and young people with rheumatological chronic conditions are known to have high levels of mental health problems and therefore are at risk of poor health outcomes. Clinical psychologists can help children and young people manage the daily difficulties of living with one of these conditions, however, there are insufficient paediatric psychologists in the United Kingdom. We urgently need to consider other ways of providing early, essential support to improve current wellbeing. One such way of doing this would be to strengthen the networks around the child or young person and the people whom they look to everyday for support, their parents/carers. Objective: The aim of this co-designed proof-of-concept study is to design, develop and test a chatbot intervention to support parents/carers of children and young people with rheumatological conditions. Methods: This study will begin by exploring the needs and views of children and young people with rheumatological conditions, siblings and parents/carers of those with rheumatological conditions, and health care professionals working in paediatric rheumatology. We will ask approximately 100 participants in focus groups where they think the gaps are in current clinical care and what ideas they have for improving upon these. Creative Experience Based Co-Design (EBCD) workshops will then decide upon top priorities to develop further, whilst informing the appearance, functionality and practical delivery of a chatbot intervention. Upon completion of a minimum viable product, approximately 100 parents/carers will user-test the chatbot intervention in an iterative sprint methodology. Results: We have full ethical approval for the study and enrolment began at the end of November 2023, with 42 currently enrolled into our focus groups. The anticipated completion of the study is April 2026. The primary outcome is to develop a product that is accessible and acceptable for parents/carers, to provide enhanced support compared to current clinical practice, with each parent/carer acting as their own control. Conclusions: This study will provide evidence on the accessibility, acceptability and usability of a chatbot intervention for parents of children and young people with rheumatological conditions. If proven useful for parents/carers, it could lead to a future efficacy trial of one of the first chatbot interventions to provide targeted and user suggested support for parents/carers of children with chronic health conditions in healthcare services. This study is unique in that it will detail the needs and wants from children, young people, siblings, parents/carers in improving support given to families living with paediatric rheumatological conditions, conducted across the whole of the UK in all paediatric rheumatological conditions at all stages of disease trajectory.

Background Young people with cancer, broadly those aged 13-24 years at diagnosis, warrant special attention; physiological and psychological growth creates complex psychosocial needs which neither adult nor child systems are suitably designed to deal with. Resulting from these needs, they are often described as ‘vulnerable’, ‘hard to reach’ and ‘difficult to engage’, and consequently are often over looked for patient and public involvement/engagement (PPIE) roles. In our study ‘BRIGHTLIGHT’, we set out to evaluate whether specialist care for young people adds value, ensuring young people were central to our PPIE activities. We believe that BRIGHTLIGHT is unique as a very large study of young people with cancer which has successfully overcome the challenges of including young people in the research process so we are confident that they have influenced every aspect of study design, conduct and dissemination. Methods We chronicle a period of 10 years, over which we describe our approach and our methods to involving young people in PPIE activities in BRIGHTLIGHT. We describe the feasibility work, study set up, conduct and dissemination of our findings, and weave through our story of PPIE to illustrate its benefits. Through the narration of our experience we highlight significant points that both influenced and changed our direction of travel. We reflect on our experiences and offer some practical advice for those looking to do the same. Results In the ten years since the BRIGHTLIGHT feasibility work began we have involved more than 1,200 young people. Their contributions have been isolated and mapped over a 10-year period. We begin at an early step of identifying what research questions to prioritize, we then plot PPIE activities for one of these research priorities, place of care, which evolved into BRIGHTLIGHT. We document steps along the way to evidence the impact of this involvement. Conclusions Young people can make a valuable contribution to healthcare research given adequate support from the research team. Although some challenges exist, we propose that the benefits to young people, researchers and the study considerably outweigh these challenges and PPIE with young people should be integrated in all similar research studies.

This paper reports on a participatory research project exploring children's experiences and views of cancer care services. It focusses on findings from interviews conducted with 10 children aged four and five years old. Play and puppets were used to help children express their views. The themes elicited reveal important aspects of hospital care for young children, such as having 'lots of toys' available and that 'mummy and daddy are near'. The use of play and puppets as a data-collection method is discussed, along with the implications of findings for the care and support of young children who have cancer.

Abstract Background There is limited qualitative research focussed specifically on what it is like for children and young people with intellectual disabilities coming into hospital, with much of the evidence‐base being about those with Autism Spectrum Condition or adults with intellectual disabilities. Aim To share rich detail of the emotional and physical impact on children and young people with intellectual disabilities of attending hospital, from their own and their parent's perspective. Methods Talking Mats interviews, sticker survey and photography with children and young people with intellectual disabilities, and in‐depth interviews, hospital diaries and photography with their parents. Results and Conclusions The multiple and compounding layers of complexity surrounding hospital care of children and young people with intellectual disabilities resulted in challenges associated with loss of familiarity and routine, undergoing procedures, managing sensory overload, managing pain and having a lack of safety awareness. An individualised approach to their care is needed.

Background The need to review health service provision for children and young people (CYP) with disabilities and their families in the United Kingdom has been expressed in multiple reports: the most consistent message being that services need to be tailored to meet their individual needs. Our aim was to understand the hospital related needs and experiences of CYP with intellectual disabilities. Method An ethnographic study of a neurosciences ward and out-patient department was conducted within a paediatric tertiary hospital setting. Results Five themes, developed using the acronym LEARN, explained what is important to CYP with intellectual disabilities in hospital; 1) Little things make the biggest difference, 2) Eliminate unnecessary waiting, 3) Avoid boredom, 4) Routine and home comforts are key and 5) Never assume. Conclusions It is imperative that we continue to challenge the idea that it is acceptable to exclude CYP with intellectual disabilities from research because of their inability to participate.

The number of subjects that have successfully completed treatment for a cancer diagnosed during childhood and are entering adulthood is increasing over time. Members of the International Berlin-Frankfurt-Munster (I-BFM) Early and Late Toxicity Educational Committee (ELTEC) invited 45 paediatric cancer experts (representing oncologists, psychologists, nurses, epidemiologists, parents, and survivors) from 13 European countries (with five additional experts from North America) to Erice, Sicily (from October 27 to 29, 2006) to discuss the circumstances in which the word ‘cure’ should be used when speaking about children with cancer, and when and why continuing follow-up and care may be required. The objective of the gathering was to generate from the personal and professional experience of the participants an overview statement of the group’s philosophy of cure and care of survivors of childhood cancer. The ten points reflect what the group considers essential in the survivors’ cure and care.

BackgroundInequities exist in service provision for hospitalised children and young people (CYP) with learning disability (LD) and/or autism spectrum condition (ASC), with risks that need mitigating, to promote safety and improve the experiences of this patient population and their families.AimThe overall aim of the In Safe Hands study was to develop a risk assessment instrument to identify risk factors associated with CYP with LD and/or ASC being in hospital and to enable the identification and delivery of reasonable adjustments that meet the needs of this complex patient population. This presentation aims to present feasibility testing of the instrument.MethodsFeasibility sessions were conducted via zoom and facilitated by a nurse. The nurse shared the instrument virtually, enabling the parent to view the content and fully participate in the process of assessing their child’s needs. The identification of suitable reasonable adjustments for each specific need were discussed in partnership with the parent. Following the feasibility session, each participant was interviewed via zoom using an assessment framework which included questions relating to use and understanding of the instrument, to gain feedback about the session.Results and ConclusionsParents (n=4) of children with LD and/or ASC and nurses (n=3) tested the feasibility of the instrument. The feasibility sessions ranged from 1 hour 12 minutes to 1 hour 37 minutes. Findings demonstrated positivity towards the instrument’s intended use, but both participant groups identified that the amount of time required to complete the instrument was lengthy, offering suggestions to streamline its design and increase usability. The individuality and uniqueness of each child’s needs was highlighted.Participants perceived that the instrument will help to raise awareness of what CYP with LD and/or ASC require when hospitalised, however recognition of each individual’s unique needs was deemed essential.

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.DesignQualitative 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.SettingSpecialist children’s hospital in London, UK.ParticipantsThirty-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).ResultsThree 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.ConclusionsThe 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.

Objectives To engage children who have experienced cancer, childhood cancer survivors, their families, and professionals to systematically identify and prioritise research questions about childhood cancer to inform the future research agenda. Design James Lind Alliance Priority Setting Partnership. Setting UK health service and community. Methods A steering group oversaw the initiative. Potential research questions were collected in an online survey, then checked to ensure they were unanswered. Shortlisting via a second online survey identified the highest priority questions. A parallel process with children was undertaken. A final consensus workshop was held to determine the Top 10 priorities. Participants Children and survivors of childhood cancer, diagnosed before age 16, their families, friends, and professionals who work with this population. Results Four hundred and eighty-eight people submitted 1299 potential questions. These were refined into 108 unique questions; four were already answered and three were under active study, therefore removed. Three hundred and twenty-seven respondents completed the shortlisting survey. Seventy-one children submitted questions in the children’s surveys, eight children attended a workshop to prioritise these questions. The Top 5 questions from children were taken to the final workshop where 23 questions in total were discussed by 25 participants (young adults, carers and professionals). The top priority was, ‘Can we find effective and kinder (less burdensome, more tolerable, with fewer short- and long-term effects) treatments for children with cancer, including relapsed cancer?’ Conclusions We have identified research priorities for children’s cancer from the perspectives of children, survivors, their families, and the professionals who care for them. Questions reflect the breadth of the cancer experience, including diagnosis, relapse, hospital experience, support during/after treatment and the long-term impact of cancer. These should inform funding of future research as they are the questions that matter most to the people who could benefit from research.

OBJECTIVEWe conducted a UK-wide survey to identify the top 10 research questions for young people's cancer. We conducted secondary analysis of questions submitted, which were 'out-of-scope' of the original survey aim. We sought to disseminate these questions, to inform practice, policy and the development of potential interventions to support young people with cancer. DESIGNJames Lind Alliance Priority Setting Partnership. PARTICIPANTSYoung people aged 13-24 with a current/previous cancer diagnosis, their families/friends/partners and professionals who work with this population. METHODSEight hundred and fifty-five potential research questions were submitted, and 326 were classified as 'out-of-scope'. These questions, along with 49 'free-text' comments, were analysed using thematic analysis. RESULTSThe 375 out-of-scope questions and comments were submitted by: 68 young people, 81 family members/partners/friends and 42 professionals. Ten overarching themes were identified: diagnostic experience; communication; coordination of care; information needs and lack of information; service provision; long-term effects and aftercare support; family support; financial impact; end-of life care; and research methods and current research. CONCLUSIONSThe need to tailor services, information and communication is a striking thread evidenced across the 'out-of-scope' questions. Gaps in information highlight implications for practice in revisiting information needs throughout the cancer trajectory. We must advocate for specialist care for young people and promote the research priorities and these findings to funding bodies, charities, young people and health and social care policymakers, in order to generate an evidence base to inform effective interventions across the cancer trajectory and improve outcomes. PATIENT/PUBLIC CONTRIBUTIONSPatients and carers were equal stakeholders throughout.

We critically examined research on health-related quality of life (HRQL) in children and adolescents after liver transplantation. The specific aims were to identify research studies on HRQL after liver transplantation, to critique the methodological quality of the studies, to estimate overall HRQL after transplant, and to make recommendations for future research. Databases searched included Medline, Cumulative Index to Nursing and the Allied Health Literature, PsycINFO, EMBASE, Allied and Complementary Medicine, Institute for Scientific Information Web of Science, and Applied Social Sciences Index and Abstracts. Searches also were made on related Web sites and proceedings of transplantation and associated conferences. Eligible studies involved children between birth and 18 years of age who received isolated orthotopic, auxiliary, or living related liver transplantation. HRQL was assessed through 2 or more of the domains of physical health, psychological functioning, social functioning, family functioning, or general well-being. Eligible studies were abstracted, assessed for methodological quality, and synthesized using the sign test to provide an indication of the effect of liver transplantation on each HRQL domain. The synthesis of findings suggested an improvement in HRQL in comparison with pretransplant status; there was a trend toward a worse HRQL in comparison with the healthy population and better than those with other chronic illnesses. In conclusion, liver transplantation in childhood has a negative impact on some aspects of HRQL. However, this finding is tentative because of the small number of studies and variable study quality found.

BackgroundImplementing an electronic patient record (EPR) system with a tethered patient portal (MyGOSH) in a children’s hospital was always going to be a challenge. The Going Digital study sought to understand the experiences and perceptions of all users of the new system before and after implementation.MethodsA concurrent mixed methods design was utilised over a three-year period consisting of: World Café workshops, pre/post implementation surveys and interviews, and a focus group. This approach enabled understanding of the breadth and depth of user experiences including the practical and ethical considerations related to digital transformation.ResultsA total of 6245 participants took part in the study. Findings were complex and heterogeneous. Benefits from implementation were reported such as easier access to health information and improved communication from care teams, however, potential benefits were more readily described due to a prolonged period (12-18 months) for all users, particularly hospital staff, to adjust to using the new system. Young people (n=488) wanted access to their health records, requiring support in doing this. Parents (n=3955) perceived staff to be unprepared for the hospital’s transition to EPR/MyGOSH, which lead to a lack of standardisation, with varied approaches to care reported, leading to unfulfilled expectations. Complex tensions also existed in relation to the parental role and responsibilities, and their child’s developing autonomy. Hospital staff members (n=1802) found assessing competence/capacity for portal access complex, and managing user expectations was challenging whilst trying to promote equitable care provision.ConclusionComplexities exist in implementing EPR/patient portal in a children’s hospital, whilst allowing young people access to their records, however, the Going Digital study provides a recent, modern example of how this can be achieved. Recommendations for clinical practice and future research are described for all users of the system.

Introduction Parents of a child with cancer want to be involved in making treatment decisions for their child. Underpinning and informing these decisions are parents’ individual values and preferences. Parents of a child who has a poor prognosis cancer and who subsequently dies can experience decisional regret. To support parents, and potentially reduce decisional regret, identifying the values and preferences of parents who are making these treatment decisions may enhance the support that can be provided by healthcare professionals. An increased understanding will support future work in this area and identify research gaps that could strengthen support strategies in clinical practice. The aim of this scoping review is to explore parent values and preferences underpinning treatment decision making when their child is receiving cancer-directed therapy for a poor prognosis cancer. Methods and analysis The Joanna Briggs Institute scoping review methodology will be followed. An initial database search of CINHAL and MEDLINE will be conducted to analyse the keywords using subject headings and Medical Subject Headings terms. Articles will be initially screened on title and abstract. The reference and citation lists of the full-text articles to be included will be searched using Web of Science. Articles will be independently reviewed by two reviewers and any discrepancies discussed with a third reviewer. Data extracted will be presented in tabular, diagrams and descriptive summaries. Ethics and dissemination Ethical approval is not required for this scoping review. This review will inform further research with parents to understand their values and preferences when making repeated treatment decisions when their child has a poor prognosis cancer. All outputs will be disseminated through peer-reviewed publications and conference presentations. This scoping review is registered on the Open Science Framework (https://osf.io/n7j9f).

PURPOSE OF THE RESEARCH: To explore the knowledge, attitudes and beliefs of nurses who administer chemotherapy to children and young people. METHODS AND SAMPLE: A national postal survey of nurses working within the 21 cancer centres in the United Kingdom and Ireland. The questionnaire included 25-items addressing the attitudes, beliefs and concerns regarding nurses' roles, support mechanisms and educational preparation related to administration of chemotherapy. RESULTS: In total 286/507 (56%) questionnaires were returned. The majority of nurses worked in inpatient +/-outpatient (78%) settings and most gave chemotherapy on a daily basis (61%). The median time working in oncology was 10 [range 0.5-32] years and time administering chemotherapy was 8 [0.1-32] years. Aspects of administration that caused the most worry included treatment side-effects, extravasation, dealing with allergic/anaphylactic reactions and knowledge deficits in colleagues. There was no significant difference in worry according to level of nurse education but those with an oncology qualification had less Knowledge-related worry (p = 0.05). There was no difference in attitude according to level of education or having an oncology qualification. There were significant correlations between time qualified, time working in oncology and the number of years administering chemotherapy and the worry domains (ranging from r = -0.14 to r = -0.24, p 

BACKGROUND: There are gaps in the existing evidence base about assent, with conflicting and unhelpful views prevalent. We contend that appropriate assent is a valuable process that has important consequences for children's/young people's participation in research. Furthermore, there is a need for a model to support researchers in making decisions about who to assent and how to do this is a meaningful way. METHODS: We undertook a scoping review of the literature to assess the body of opinion on assent in research with children/young people. An anonymous online survey was conducted to gather views from the wider community undertaking research with children/young people. We also sought to gather examples of current and effective practice that could be shared beyond the level of a single institution and our own experience. Survey participants included 48 health professionals with varied levels of experience, all actively involved in research with children. RESULTS: Published work, the findings from the online survey and our knowledge as experienced researchers in the field have confirmed four domains that should be considered in order for assent to be meaningful and individualized: child-related factors, family dynamics, study design and complexity and researcher and organizational factors. Mapping these domains onto the three paradigm cases for decision-making around children and young people's assent/consent as recommended by the Nuffield Council on Bioethics has resulted in a model that will aid researchers in understanding the relationship between assent and consent and help them make decisions about when assent is appropriate. CONCLUSIONS: The debate about assent needs to move away from terminology, definition and legal issues. It should focus instead on practical ways of supporting researchers to work in partnership with children, thus ensuring a more informed, voluntary and more robust and longer lasting commitment to research.

Purpose Malnutrition is common in children with cancer. While multiple validated malnutrition screens exist, there is no universal, standardized approach to screen or diagnose malnutrition. The Multinational Association of Supportive Care in Cancer (MASCC) Pediatric Study Group is focused on oncologic supportive care for children and young adults. This subgroup designed and administered a pilot study to characterize global malnutrition screening, diagnosis, and treatment practices for pediatric patients with cancer after identifying variations in malnutrition practice patterns within its members. Methods A novel, exploratory survey was iteratively developed and distributed in early 2020 to 45 MASCC Pediatric Study Group members. The survey included multiple questions with standard patient presentations and nutritional scenarios, and the respondents selected the answer that best reflected the care patients would receive at their institution. Results A validated screening tool to assess for malnutrition was routinely used by 15 of 26 respondents (58%). No single validated screen was used by more than 24% of responders, and 11 of 26 (42%) reported not having a standard malnutrition treatment screen. When the same patient was presented with the survey using different malnutrition indicators, patient care plans varied greatly. This was particularly true for z-scores compared to weight percentiles. Conclusions Development of consensus recommendations for screening practices, preferred malnutrition indicators, and treatment guidelines could help reduce the underdiagnosis of malnutrition and subsequent variation in its management and ought to be a focus of the global pediatric cancer supportive care community.

This chapter contains section titled: Setting the scene Drivers towards increased participation of young people Why participation is important Levels of participation Young people as partners in research Methodologies used to facilitate participation in research Evaluating participation Conclusion References

AIM: To examine with families their views on the service they receive in a Paediatric Haematology/Oncology Day Care Unit. BACKGROUND: National policy emphasises the importance of involving children, young people and families in the planning of services they are receiving. To be responsive to real, as opposed to perceived needs, health care professionals are actively seeking ways to capture the voice of the families they care for through a process of consultation and action. DESIGN: Focus groups. METHOD: A series of focus groups were undertaken with 16 families who were either on treatment or within six months of completion of treatment for acute lymphoblastic leukaemia. Tape- and note-based analysis was initially undertaken and the data sorted by means of an overview grid. Data were then analysed by the research team through comparison and agreement of final themes. RESULTS: The majority of families were satisfied with the care they received. Six themes are described that capture their combined thoughts on their overall experience; navigating the maze, communication, continuity of care, environment, waiting and organisation of care. CONCLUSIONS: Focus groups are an effective means of obtaining data from service users. Group discussion allowed for the sharing and development of ideas to be incorporated into developments within the service. RELEVANCE TO CLINICAL PRACTICE: Increasingly, children, young people and their families are being cared for within Paediatric Haematology/Oncology Day Care units, it is, therefore, vital that this aspect of care is designed, co-ordinated and delivered around the needs of the family. This can only be achieved by listening to the stories of those families who use our service to confirm what it is that works well and what areas of care may need to be enhanced.

Adolescent and Young Adult (AYA) Oncology research is steadily but perceptibly entering a more mature phase. Adolescent and Young Adult-specific services have existed for almost 30 years, embedded in England since the National Institute for Health and Care Excellence (NICE) published guidance in 2005 directing where and how AYA aged 16-24 years were to be treated and cared for. Similar progress is being made with services across the world, where the lower age is considered to be in the region of 13 years at diagnosis and the upper age ranging from 29-39 years depending on jurisdiction (Husson, Manten-Horst et al., 2016, Saloustros, Stark et al., 2017, Stark, Bielack et al., 2016). Somewhat later than the development of specialist services was the need to evaluate the outcomes associated with such services, subsequently there has been an increase in high quality, programmatic research to evaluate and guide services (Parsons, Harlan et al., 2015, Stark, Bielack et al., 2016, Whelan J, 2012, White, Daly et al., 2016).

Cancer-related fatigue is a prevalent, but often under-recognized, symptom with the potential to impact the lives of both the child and the family. There is little known about the biological and the behavioral dimensions of fatigue, and not about the patterns of this symptom. The aim of this study was to investigate cancer-related fatigue from the perspective of parents of children and young people with cancer and from the perspective of healthcare professionals (HCPs) and to examine its impact on quality of life. A cross-sectional, questionnaire-based survey was undertaken with parents of patients attending 4 of the 22 United Kingdom Childhood Cancer Study Group centers; HCPs from 20 of these centers were also surveyed. Response rates were 42% for parents and caregivers (95/224) and 35% for HCPs (235/679). Results showed that fatigue was prevalent. Fifty-six percent of HCPs thought "most" or "all" patients experienced moderate fatigue; 57% of parents said that the patient experienced fatigue at least once a week. Data demonstrate that fatigue was perceived to be a significant problem by parents and HCPs. Healthcare professionals indicated that the mean percentage of patients who experience fatigue, to whom they recommended a treatment, was 29%. Rest and relaxation were recommended by the majority (59%; 138). The overall impression is that both HCPs and parents acknowledge that children and young people are likely to experience fatigue. Recognition of the significance of this symptom is a crucial first step in improving future management and offering strategies that can help both child and family.

Introduction Long-term morbidity associated with survival from childhood cancer is well defined. Traditional models of hospital-based long-term aftercare are not sustainable and may not be necessary for all. A programme to support development and implementation of redesigned care pathways is reported. Method Application of service improvement methodologies to identify the case for change, to evidence development of, and test, new aftercare pathways. Results Four models of aftercare were identified; traditional cancer centre-delivered medical follow-up, shared care with local hospitals or primary care, specialist nurse-led supported management and self-management. Key components required for successful implementation of risk-stratified care included; comprehensive information transfer with treatment summaries and care plans, provision of care coordinators, effective transition across services, remote monitoring systems, educating professionals, maintaining patient choice. Conclusions Adoption of risk-stratified evidence-based aftercare pathways, generated through application of service improvement methodologies, can result in the delivery of enhanced quality and productivity.

This study examined participants' views on children's participation in information-sharing and communication interactions. A descriptive qualitative approach was taken with individual interviews held with children (The term 'children' is used to denote both children and adolescents and to avoid cumbersome repetition.) aged 7-16 years (n = 20), their parents (n = 22) and healthcare professionals (n = 40) at a children's hospital in Ireland. Data were analysed using the constant comparative method and managed with NVivo (version 8). The findings indicate that professionals strongly supported an open and honest approach to information-sharing; however, this viewpoint was not shared by all parents. The need to maintain hope and spirit and promote an optimistic identity influenced the amount and type of information shared by parents. Children trusted their parents to share information, and valued their parents' role as interpreters of information, advocates, and communication buffers. Most professionals endorsed parents' primacy as managers of information but experienced difficulty navigating a restricted stance. This study adds important insights into the complexities of information-sharing in triadic encounters. Professionals need to maintain an open mind about information-sharing strategies families may choose, remain sensitive to parents and children's information requirements and adopt a flexible approach to information provision.

The transition of young people with long-term health conditions from children’s or adolescent health services into adult services is a crucial time, yet processes continue to be disjointed, often falling short of what can be described as a ‘good experience’. Consequences are many, including deterioration in young people’s health, disengagement from services, with short-and-long term effects.Following the successful development of an exemplar Model of Improvement for Transition at Leeds Teaching Hospital Trust (LTHT), a National Transition Nursing Network is being implemented across England. A formal evaluation of this quality improvement model for transition is underway, funded by the Burdett Trust for Nursing.This evaluation uses a multi-centre concurrent mixed methods design, with qualitative (interviews/auto-ethnography/case studies), and quantitative descriptive (surveys) data collected simultaneously over three phases with: young people, parents, transition champions and key professionals involved in the young person’s transition journey, the Burdett National Transition Nursing Network’s Lead Nurse and Regional Nurse Advisors. Data will be analysed using thematic analysis (interviews), content analysis (auto-ethnography) and descriptive statistics (surveys). The first step is a realist synthesis of the literature to address gaps in understanding what works for whom, in what circumstances, how and why it works, in relation to all young people transitioning from children’s/adolescent services into adult services. Using these combined methods, we will examine the mechanisms that explain ‘how’ the outcomes were caused and the influence of context.This presentation will outline the methods for the National Transition Evaluation Study. We will illustrate why it is necessary to go beyond the question ‘Does it work?’, to show how context has a role to play, how we will explore context to really understand why transition is working well or less well in different settings; essential to inform both practice, policy and future research.

Background: Patient-reported outcome measures (PROMs) are questionnaires measuring patients’ views of their health status; patient-reported experience measures (PREMs) are questionnaires measuring patients’ perceptions of their experience whilst receiving healthcare. Little is known about the routine use of PREMs and PROMs to improve experience and outcomes in paediatric clinical settings. Methods: The Joanna Briggs Institute review process was used to map studies that addressed how PREMs/PROMs are used to assess experiences and outcomes of children’s and young people’s (CYP) care and treatment in hospital and what the barriers and facilitators are to using PREMs/PROMs in routine hospital care. Key search terms were developed and seven data bases and sources of grey literature searched. Results: Abstracts of 24020 sources were screened; 269 were eligible for full-text review and 108 met criteria for inclusion. Ninety-four sources included data on PROM use only; 7 included data on PREM use only and 7 included both PROM and PREM use. Seventy-nine studies (78%) were undertaken in one of three countries (USA, UK and Netherlands) with 12 further countries undertaking 1-8 studies each. A diverse range of specialties (n=29) was included, with PROM and/or PREM use described in mental health and oncology most frequently. Participants included CYP, parent-proxies and health professionals with participant numbers ranging from 1-18687. Barriers to PROM/PREM use included time constraints, limited access to resources and perceived unhelpfulness. Studies reported facilitators as ease of use, perceived helpfulness to inform care and patient/parent perceptions of the importance of the opportunity to report on their experiences and outcomes. Conclusion: PROMs and PREMs data mayhave the potential to improve patient experiences and outcomes in routine clinical practice by improving the quality of care but their use is infrequently reported. Better reporting of their use and how findings are used to inform routine care is now required.

Purpose To determine whether non-physical activity mind and body practices reduce the severity of fatigue in patients with cancer or hematopoietic stem cell transplant (HSCT) recipients compared to control interventions. Methods We included randomized trials which compared non-physical activity mind and body practices compared with control interventions for the management of fatigue in cancer and HSCT patients. Results Among 55 trials (4975 patients), interventions were acupuncture or acupressure (n = 12), mindfulness (n = 11), relaxation techniques (n = 10), massage (n = 6), energy therapy (n = 5), energizing yogic breathing (n = 3) and others (n = 8). When combined, all interventions significantly reduced fatigue severity compared to all controls (standardized mean difference −0.51, 95% confidence interval −0.73 to −0.29). More specifically, mindfulness and relaxation significantly reduced fatigue severity. Conclusions Mindfulness and relaxation were effective at reducing fatigue severity in patients with cancer and HSCT recipients. Future studies should evaluate how to translate these findings into clinical practice across different patient groups.

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.

ASyMS© is an Advanced Symptom Management System utilising mobile phone technology to monitor chemotherapy-related symptoms and promote self-care. It was first developed with an adult cancer population and is now being evaluated with young people through an iterative development process. ASyMS© involves patients recording and sending symptom reports to the hospital and receiving tailored self-care advice. Health professionals are alerted when severe symptoms are reported. Three phases of the ASyMS©-YG (young people) study are complete. Phase 1 involved young people identifying the symptoms to be assessed. Phase 2 involved young people testing the symptom report system, and ascertaining young people's, parents' and professionals' perceptions of ASyMS©-YG. This paper reports on Phase 3, in which the system was developed further in preparation for a randomised controlled trial (RCT). Health professionals devised an alert system based on risk modelling side-effect severity, and young people and professionals developed self-care advice. A pilot study was conducted to test the alert system and study design in readiness for a definitive RCT. The contribution young people and professionals have made to this project is invaluable in evaluating the practical effectiveness of ASyMS©-YG and ensuring the intervention is acceptable and works in everyday practice. © The Author(s) 2010.

BackgroundChildren undergoing bone marrow transplant (BMT) often become unable to eat and drink putting them at risk of malnutrition. Additionally, they must take many medicines for months post-BMT. Tube feeding becomes required by almost all children to meet these demands, with parents in charge of using them and administering the prescribed medications and enteral feeds. Two tubes are typically used: nasogastric or gastrostomy. At the UK centre where this study took place, parents are offered choice of these tubes. This qualitative study explored why parents chose the tube they did and compared their experiences of tube feeding.MethodsRecruitment occurred during pre-admission consultations with the BMT team. Parents took part in semi-structured interviews at two time points; on admission, to explore why they chose a nasogastric or gastrostomy tube, at 1-2 months post-discharge to explore their experience of using the tube. Interviews took place over 18 months, were recorded, transcribed and thematically analysed.ResultsSixteen parents whose child had a nasogastric tube, 17 a gastrostomy, were interviewed. Choice was experienced very differently with spectrums of difficulty and freedom. Some parents had complete freedom to choose whereas others were told which to have by clinicians. Many parents deferred to the expertise of clinicians whilst others felt they were the experts in their child. Parents valued being given the choice with an appreciation that one size does not fit all when it comes to tube feeding. Influential factors in decision making included length of time in use, the child’s age, activity, cosmetic differences, weighing up the risk of gastrostomy surgery, lay advice and prior experiences.ConclusionClinical teams can help parents navigate this complex decision-making process, weigh up their options and make a truly informed choice through collaborative discussions and provision of more detailed and balanced information.

The intensive conditioning regimens administered during bone marrow transplant (BMT) frequently cause mucositis, gastrointestinal toxicity and reduced oral intake. Children are consequently at risk of malnutrition. First-line nutrition support is recommended as enteral nutrition (EN). Nasogastric tube (NGT) is the mainstay for administration. Gastrostomies provide an alternative, but there is limited evidence of their efficacy and safety in paediatric BMT. This study aimed to compare enteral tube complications and nutritional and clinical outcomes between children with a gastrostomy versus NGT throughout BMT. A prospective cohort study was conducted at a single centre in the United Kingdom. During pre-admission consultations families were offered choice of a prophylactic gastrostomy or NGT. Children undergoing allogeneic BMT were recruited from April 2021 to April 2022. Data compared between children with either tube included: tube complications, change in weight, body mass index and mid-upper-arm circumference, calorie, protein and fluid intake, timing and use of EN and parenteral nutrition, survival, graft-versus-host disease and length of admission. Following BMT, data were collected weekly for the first six weeks from electronic records, monthly thereafter from 3-day averaged food diaries and clinic assessments, until six months post-BMT. Nineteen children with NGT were compared to 24 with a gastrostomy. Of gastrostomy complications, 94.2% (129/137) were minor, mechanical issues being most common (80/137). Dislodgement comprised 80.2% (109/136) of NGT complications. No significant differences were seen between tubes on nutritional, anthropometric and clinical outcomes. Gastrostomies were popular with families, relatively safe, associated with mostly minor complications and similarly effective as NGTs in supporting children's nutritional intake and status. Where an NGT may not be tolerated, a prophylactic gastrostomy could be considered. Placement of either tube requires balancing their risks, benefits, the child's nutritional status, conditioning, expected duration of EN and family preferences.

OBJECTIVE: Young people with cancer exhibit unique needs. During a time of normal physical and psychological change, multiple disease and treatment-related symptoms cause short and long-term physical and psychosocial effects. Little is known about how young people cope with the impact of cancer and its treatment on daily routines and their strategies to manage the challenges of cancer and treatments. We aimed to determine how young people describe these challenges through a social media site. METHODS: Using the principles of virtual ethnography and watching videos on a social media site we gathered data from young people describing their cancer experience. Qualitative content analysis was employed to analyse and interpret the narrative from longitudinal 'video diaries' by 18 young people equating to 156 films and 27 h and 49 min of recording. Themes were described then organized and clustered into typologies grouping commonalities across themes. RESULTS: Four typologies emerged reflective of the cancer trajectory: treatment and relenting side effects, rehabilitation and getting on with life, relapse, facing more treatment and coming to terms with dying. CONCLUSIONS: This study confirms the need for young people to strive towards normality and creating a new normal, even where uncertainty prevailed. Strategies young people used to gain mastery over their illness and the types of stories they choose to tell provide the focus of the main narrative. Social Media sites can be examined as a source of data, to supplement or instead of more traditional routes of data collection known to be practically challenging with this population. Copyright © 2016 John Wiley & Sons, Ltd.

Background Pain in children and adolescents with cancer has been identified as an area where many healthcare professionals seek guidance. This protocol details a systematic review whose aim is to explore current knowledge regarding measurement instruments to assess pain (and pain-related distress) in children and adolescents with cancer. After completion of the review, the information will be used in the development of a clinical practice guideline. Methods We will search four electronic databases (MEDLINE via PubMed, CINAHL, PsycINFO and HaPI). Additional relevant studies will be identified by reference checking and expert consultation. All citations will be screened independently by two reviewers in a three-step approach: first selection based on title, second selection based on abstract, third selection based on full-text. Studies in children and adolescents with cancer that aimed to evaluate the clinimetric properties of an existing pain measurement instrument or to develop a new pain measurement instrument and that include at least one relevant outcome (reliability, validity, responsiveness, interpretability, clinical utility) are eligible for inclusion. For all steps of evidence selection, a detailed list with eligibility criteria will be determined a priori. Data extraction and quality assessment of included studies (according to the COnsensus-based Standards for the selection of health Measurement INstruments, COSMIN criteria) will be conducted independently by two authors. Discussion This systematic review will provide an overview of the current literature regarding measurement instruments to assess pain in children and adolescents with cancer. This knowledge synthesis will be used to formulate recommendations for clinical practice. Also, by synthesizing existing evidence, knowledge gaps will be identified.

Objectives To understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16–40 years and how this might affect care. Design We used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and workshops) informed by a preliminary programme theory: realist analysis of data within these themes enabled revision of our theory. A realist logic of analysis explored contexts and mechanisms affecting outcomes of care. Setting Three cancer centres and associated palliative care services across England. Participants We aimed for a purposive sample of 45 people with cancer from two groups: those aged 16–24 years for whom there may be specialist cancer centres and those 16–40 years cared for through general adult services; each could nominate for interview one family member and one healthcare professional. We interviewed three people aged 16–24 years and 30 people 25–40 years diagnosed with cancer (carcinomas; blood cancers; sarcoma; central nervous system tumours) with a clinician-estimated prognosis of ˂12 months along with nominated family carers and healthcare professionals. 19 bereaved family members and 47 healthcare professionals participated in workshops. Results Data were available from 69 interviews (33 people with cancer, 14 family carers, 22 healthcare professionals) and six workshops. Qualitative analysis revealed seven key themes: loss of control; maintenance of normal life; continuity of care; support for professionals; support for families; importance of language chosen by professionals; and financial concerns. Conclusions Current care towards end of life for young adults with cancer and their families does not meet needs and expectations. We identified challenges specific to those aged 16–40 years. The burden that care delivery imposes on healthcare professionals must be recognised. These findings can inform recommendations for measures to be incorporated into services.

The American Nurses Association (1995, cited by Hamric 1996) characterize advanced practice by: autonomy to practice at the edges of the expanding boundaries of nursing's scope of practice; a preponderance of self-initiated treatment regimens as opposed to dependent functions and greater complexity of clinical decision making; and greater skill in managing organizations and environments (p46) than basic nursing practice. Manley's (1997) notion of expert practice would seem to be implicit in this statement, with her thoughts on the multidimensional nature of advanced practice, where practitioners have a responsibility to develop clinical nursing from clinical to strategic and policy levels contributing a further dimension. Such a definition may facilitate clarity, thus ensuring that the title of ANP is only used to refer to practitioners who can fulfil this role. (Box 4:Reflection item 4.) There can be no doubt that expansion and advancement in clinical nursing practice is due. This must be considered whilst recognizing that the interests of clients, and their families, and the quality of patient care remain central to service provision. In addition, consideration must be given to the effect on nursing workload and the extent to which nurses can continue to take on additional duties (Mitchinson & Goodland 1996). It may be as Manley (1996) suggests: …that aspects of advanced practice may be intangible and that it is about responding autonomously in ways perceived necessary to develop the service (p 57). However, establishing ‘new roles’, roles that shift boundaries in professional care, is not as straightforward as it may seem. It takes time and thought, where assessing what is needed, planning, implementation and evaluation requires collaboration between all healthcare professionals; with the foundation of the work based on evidence that includes research studies. Essential to success in meeting any of the recommendations is collaboration between practitioners and educationalists. This will result in the development of education and training programmes that can respond and evolve over time to meet the needs of a developing profession. In conclusion, this remains a time of indecision. Although discussions are continuing, which will ultimately shape future nursing roles, the whole picture is yet to be revealed. The debate must continue within the literature, and nurses expanding their role or undertaking a new, role have a responsibility to document their development and communicate this to the profession as a whole. Only time will tell whether the profession can define its own role and practice parameters within a constantly changing health care environment.

BACKGROUND: Patient and public involvement (PPI) is central to research and service planning. Identifying effective, meaningful ways of involvement is challenging. The cohort study 'Do specialist services for teenagers and young adults with cancer add value?' follows young people for three years, examining outcomes associated with specialist care. Participant retention in longitudinal research can be problematic potentially jeopardising study completion. Maximising study awareness through high impact branding and publicity may improve study retention. Study names are typically generated by researchers rather than designed with patients. We aimed to involve young people in developing a brand identity and name to 'Do specialist services for teenagers and young adults with cancer add value?'. METHODS: Nine young people aged 17-26 years diagnosed with cancer when aged 14-25 years participated in a one day workshop with further data collection at a patient conference. Methodology was similar to conventional branding and naming exercises and was divided into six stages. The workshop comprised five stages. Stage 1: 'What's in a brand' allowed young people to enquire why brands/logos are important, Stage 2: 'Brand Transformation' identified what young people needed to know and believe about the study when approached about participation, Stage 3: 'Brand Essence' determined how we wanted the study to be perceived by young people, Stage 4: 'What's in a name' identified potential names for the study. Stage 5: 'Logo creation' assembled the mood and feel of logos. Stage 6 was logo design and an electronic survey of 249 young people attending a patient conference. RESULTS: BRIGHTLIGHT was the final study name and the brand essence (or study personality) was friendly, supportive and inspiring. Four logos were designed and the final logo received 47% (n = 115) of votes. CONCLUSIONS: Acceptance and retention to BRIGHTLIGHT is higher than anticipated (80% versus 60%), this may be related to our integral PPI strategy. We propose this reproducible methodology as an important, enjoyable, and novel way of involving patients in research and a welcome alternative to researcher-developed acronyms. Ideally this should be carried out prior to engaging with healthcare professionals to prevent confusion around study identity.

Purpose: It has long been recognised that effective cancer care is not possible without multi-professional team working. Collaboration and multi-professional working however are known to be less than straightforward. This project aimed to use a collaborative approach to explore and facilitate professional groups to work together more effectively in the field of children’s cancer care. Method: Based on an earlier project in Italy, a three-year seminar series was organised involving both a doctor and nurse from 15 paediatric haematology/oncology units across Europe. Participants had to be able to speak English and commit to participate in annual seminars as well as the development and implementation of a local project to enhance doctorenurse collaboration in their own unit. Appreciative Inquiry was the methodological approach used to address organisational as well as interpersonal change. Results: Fifteen doctorenurse teams were initially selected from a range of different countries, and 10 completed the project. Key outcomes reported include implementation and successful completion of projects, publication of the results achieved, participant satisfaction with improvements in collaboration. Feedback from participants would suggest that change had been implemented and possibly sustained. Conclusions: Active involvement and group support were required for success. More formal relationships needed to be activated with participating centres to guarantee support for those involved in implementing lasting change. A web-based resource to allow other programmes and centres to use the resources developed has been made available. The same approach, we believe, could be used to improve multi-professional working in the care of other childhood illnesses

Purpose A Delphi study was undertaken to develop a framework guidance that would rationalise and standardise the care of children with febrile neutropenia (FNP) across the UK. Methods A mailed Delphi survey was undertaken with health professionals working in children's cancer units. The survey employed two rounds of feedback on 22 practice statements drawn from a systematic review of clinical evidence. Consensus was assumed for any statement where 80+ % of respondents indicated that they “agreed” or “strongly agreed”. Results Consensus was reached on 21 of the 22 practice statements in round 1 that were categorised into six areas: definition of fever and neutropenia, initial management and choice of antibiotic, defining low-risk patients, strategy in low-risk patients and alternative approaches. Consensus could not be reached on whether patients needed to be afebrile to be suitable for discharge and the required length of outpatient antibiotic treatment. Conclusions A Delphi survey allowed the successful development of a national framework for identification and management of children with FNP. The use of an existing well-functioning professional network was key in this project's success.

Much has changed since the first book Paediatric Oncology: Acute Nursing Care (1999), therefore, this new edition encompasses these changes in relation to the practice itself and the evidence that underpins it. Emphasis is placed on ensuring terminology is accurate, in keeping with the language of the current day. The book is divided into six sections: Chemotherapy, Haematopoetic Stem Cell Transplantation, General Surgery, Radiotherapy, Late Effects of cancer therapies, and Palliative Care. There is a brief commentary at the end of each section/chapter by a 'novice' author but experienced practitioner, highlighting to the reader what is already known and what the section/chapter adds to their current knowledge and practice.

It is well known and often reported that patients with long-term health conditions have problems adhering to treatment regimens. This is often reportedly worst in adolescents who struggle with the physical and psychological impact of adolescence as well as with the limitations that treatment regimens impose on their day-to-day activities. This article presents results from a larger study that aimed to discover what living with haemophilia in the 21st century was like for boys with severe haemophilia. The overall study was a multi-method, cross-sectional interview based study of 30 boys with severe haemophilia, treated with prophylaxis at a single site in the UK. Although not specifically asked in the interview schedule, opinions about treatment (prophylaxis) were given by 66% of the boys. These boys recognized that prophylaxis offered them protection from bleeding, the older and more sporty boys understood the need for tailored prophylaxis around 'risk' activities such as sport or events away from home. For some boys this meant low dose daily prophylaxis, and this further enhanced treatment adherence, as it became firmly embedded in their daily ritual of health care. This study shows that adolescent boys are in fact adherent with treatment, possibly at a schedule decided upon by them rather than one directed by the haemophilia centre. They are able to comprehend complex treatment decisions and make treatment plans that offer them maximum protection with minimal interference in their day-to-day activities.

This study explored the relationships among resilience, self-esteem, and depressive symptoms in Hong Kong Chinese adolescents. We selected a stratified random sample of 1816 Form 1 students from all 18 districts of Hong Kong. This study revealed that about 21% adolescents are experiencing some depressive symptoms. Our results contribute novel findings to the literature showing that resilience is a strong indicator of adolescents at a higher risk of depression and increasing adolescents’ resilience to psychological distress is crucial to enhance their mental wellbeing. It is crucial to develop interventions that can enhance resilience and promote positive mental wellbeing among adolescents.

Constipation is a common problem in children and young people with cancer. Treatment of this complication is subject to wide variation in practice. We undertook a systematic review of randomized controlled trials to build a rational approach to prophylaxis and treatment of this complication. Randomized controlled trials of any intervention (pharmacologic, physical. complementary. or alternative) to prevent or treat constipation were to be included if they included children and young people 16 years old and younger who were undergoing treatment for malignancy. Of the 1336 abstracts retrieved from the searches. only 3 papers were identified for further assessment, and no studies were suitable for inclusion. There are no good data on which to base the management of constipation in children and young people with cancer. This is not to say that we do not know if laxatives work-they are clearly effective. Our ignorance is of the comparative value of different agents. The practical problems with undertaking specific trials of supportive care measures are large. and integration Of Such questions into treatment trials is essential.

Adolescence is a difficult time for those with chronic illness because of the constraints of the illness on developmental tasks. Little is known about the impact liver transplantation has during adolescence. In this study we aimed to explore, in their own words, young people's lived experience of life after transplantation. We used semistructured interviews to collect narrative data, and used a purposive sample of 14 young people in early, middle, and late adolescence, transplanted for a range of chronic, acute, and metabolic liver diseases. We analyzed the transcripts using a framework in which analysis progresses through a five-stage process of matrices. Six main themes emerged, related to relationships, affect on schooling, tiredness and fatigue, acceptance of the burden of medication, communication with health professionals, and view of the future. These findings add new insight into the transplantation experience, which might lead to improvements in care and help direct further research in this important aspect of clinical care.

Mucositis is a challenging treatment-related complication in children receiving therapy for cancer. The conduct of clinical trials that investigate mucositis prevention and treatment requires adequate evaluation of the oral cavity. However, few instruments to measure mucositis in children have been appropriately developed or evaluated. A focus group of nine health care professionals with expertise in mucositis assessment, oral assessment in children and paediatric cancer aimed to determine the challenges and possible solutions to mucositis assessment in children. The results led to the identification of several areas of concern that included: (1) challenges in oral assessment in children related to age and cooperation, (2) the need for proxy responses while recognizing the challenges of reporting pain and function attributed to oral mucositis, (3) the need for an instrument that is simple, quick to complete, and easy to use in almost all children and (4) educational considerations. The results provide a basis from which guidelines for the oral assessment of mucositis in children can begin. This information could be used to aid in the development of a new scale for the assessment of oral mucositis in children.

Follow-up care for survivors of childhood cancer is increasingly seen as a priority service as numbers of survivors increase. Despite this there are few published evaluations of the available options. We conducted a systematic review of published and unpublished literature. Seven uncontrolled studies, and one comparative study of a related intervention, were identified. Observational data suggest that follow-up care was useful even for patients who did not perceive this as a need. Suitably powered, well-conducted, controlled trials of adequate duration that directly compare follow-up models are required to provide robust evidence on the optimal care for these patients. Pediatr Blood Cancer 2013; 60: 351–356.

BACKGROUND: Families and professionals caring for a child without a definitive diagnosis face unique challenges, particularly in relation to: managing uncertainty; access to healthcare; obtaining relevant information and support; and trying to navigate a healthcare system that is often fragmented. We used co-design to inform the establishment of the first UK specialist nursing post dedicated to working with children with undiagnosed genetic conditions and their families. OBJECTIVES: 1) To understand what families and hospital staff want from the service; 2) To understand how the post should be operationalised in practice; 3) To develop the job description and person specification for the post-holder. METHODSA range of approaches were used to collect data: interviews (nine parents and 10 hospital staff); a focus group (three parents); a creative workshop (six patients and siblings); and an online forum (81 parents). Data were analysed using framework and thematic analysis. The strands of data were brought together and reviewed as a whole to formulate the post-holder's job description and person specification. RESULTS: Stakeholders identified nine key elements to the role which were incorporated into the job description: practical support; point of contact; community liaison; signposting to other services; care coordination; supporting families; advocacy; raising awareness; and emotional support. CONCLUSIONS: Highlighted in this paper are the practical aspects of engaging and involving all relevant stakeholders in the process of co-designing a new post and subsequent staff recruitment. The flexibility employed in the setting and methods of data collection were instrumental in ensuring the views of a diverse range of participants were ascertained. A major consideration is the resources required to undertake co-design, in terms of time and finances. We believe that the resources required for the co-design are offset by the advantages of having the right person in the right post, doing the right job.

Focus groups have become a popular and widely used method in qualitative research across the diversity of healthcare. Their use however has been applied mainly to research with adult participants. Only in the last 10 years have we witnessed an expansion in their use with children and young people. This paper describes briefly the characteristics of focus groups before focusing exclusively on the methodological and practical concerns when conducting focus groups with children and young people. Focus groups require considerable preparation and skill to run. Strategies are detailed in this paper to achieve two important outcomes, successful data collection and a positive experience for participants.

Purpose: In England, health care policy promotes specialized age-appropriate cancer services for teenagers and young adults (TYA), for those aged 13-24 years at diagnosis. Specialist Principal Treatment Centers (PTCs) provide enhanced age-specific care for TYA, although many still receive all or some of their care in adult or children's cancer services. Our aim was to determine the patient-reported outcomes associated with TYA-PTC based care.Methods: We conducted a multicenter cohort study, recruiting 1114 TYA aged 13-24 years at diagnosis. Data collection involved a bespoke survey at 6,12,18, 24, and 36 months after diagnosis. Confounder adjusted analyses of perceived social support, illness perception, anxiety and depression, and health status, compared patients receiving NO-TYA-PTC care with those receiving ALL-TYA-PTC and SOME-TYA-PTC care.Results: Eight hundred and thirty completed the first survey. There was no difference in perceived social support, anxiety, or depression between the three categories of care. Significantly higher illness perception was observed in the ALL-TYA-PTC and SOME-TYA-PTC group compared to the NO-TYA-PTC group, (adjusted difference in mean (ADM) score on Brief Illness Perception scale 2.28 (95% confidence intervals [CI] 0.48-4.09) and 2.93 [1.27-4.59], respectively, p = 0.002). Similarly, health status was significantly better in the NO-TYA-PTC (ALL-TYA-PTC: ADM -0.011 [95%CI -0.046 to 0.024] and SOME-TYA-PTC: -0.054 [-0.086 to -0.023]; p = 0.006).Conclusion: The reason for the difference in perceived health status is unclear. TYA who accessed a TYA-PTC (all or some care) had higher perceived illness. This may reflect greater education and promotion of self-care by health care professionals in TYA units.

Background: Cancer is the leading cause of disease death for Adolescents and Young Adults (AYA) in developed countries. It is believed that young people experience prolonged intervals to cancer diagnosis but evidence quantifying this and identifying higher risk patient sub-groups is lacking. We examined diagnostic timeliness in a cohort of AYA with incident cancers, identifying factors associated with variation in timeliness. Methods: We analysed data from 830 AYA aged 12-24 who completed BRIGHTLIGHT faceto- face interviews, for variation in the patient interval (time from symptom onset to first healthcare presentation), the number of prereferral General Practitioner (GP) consultations, and the symptom onsetto- diagnosis interval (time from symptom onset to diagnosis). We present descriptive statistics of outcomes by patient characteristics and cancer site and multivariable regression models for adjusted estimates of associations. Findings: Among participants, 27% (204/748) experienced a patient interval of >1 month and 35% (242/701) of those consulting a GP had 3 or more prereferral consultations. The median symptom onset-to-diagnosis interval was 58 days. There was statistically significant variation for 3 or more consultations and symptom onset-to-diagnosis interval by gender (p=0.0093) and cancer site (p

The aim of the study was to establish current UK oral care practice for children with cancer. A telephone survey of all 22 United Kingdom Children's Cancer Study Group (UKCCSG) centres was undertaken. Nineteen (86%) of the centres reported using guidelines/protocols for mouth care. The use of routine preventive oral care therapies showed the greatest variation between centres. Four centres (18%) did not use any prophylactic oral care therapy other than basic oral hygiene, whereas seven (32%) routinely used a combination of three or more agents. Chlorhexidine was the most frequently administered prophylactic therapy (17/22 centres, 77%), followed by nystatin (11/22 centres, 50%). There was little variation in advice given to parents/patients on basic oral hygiene. Regarding dental check-ups, 9/22 centres (41%) recommended children to attend a hospital-linked dental clinic. Only at 8/22 centres (36%) did children undergo a dental check-up before commencing cancer treatment. The survey identified significant variation in preventive oral care therapies and dental check-ups at the UKCCSG centres. Attention needs to be given to establishing evidence based, effective strategies.

Objectives: Juvenile Dermatomyositis is a rare, potentially life-threatening condition with no known cure. There is no published literature capturing how children and young people feel about their condition, from their perspective. This study was therefore unique in that it asked children and young people what is it like to live with Juvenile Dermatomyositis. Methods: Data were obtained from fifteen young people with Juvenile Dermatomyositis, between eight and nineteen years of age from one Paediatric Rheumatology department using audio-recorded interpretive phenomenology interviews. Data were analyzed phenomenologically, using a process that derives narratives from transcripts resulting in a collective composite of participants shared experiences, called a ‘phenomenon’. Results: The overarching metaphor of a rollercoaster captures the phenomenon of living with Juvenile Dermatomyositis as a young person, with the ups and downs at different time points clearly described by those interviewed. The five themes plotted on the rollercoaster, began with confusion; followed by feeling different, being sick, steroidal and scared from the medications; uncertainty; and then ended with acceptance of the disease over time. Conclusion: Young people were able to talk about their experiences about having Juvenile Dermatomyositis. Our findings will aid clinicians in their practice by gaining a deeper understanding of what daily life is like and highlighting ways to enhance psychosocial functioning. Hopefully, this study and any further resulting studies, will raise understanding of Juvenile Dermatomyositis worldwide and will encourage health care professionals to better assess psychosocial needs in the future.

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.

Advances in technology have offered health professionals alternative mediums of providing support to patients with long-term conditions. This critical review evaluated and assessed the benefit of electronic media technologies in supporting children and young people with long-term conditions. Of 664 references identified, 40 met the inclusion criteria. Supportive technology tended to increase disease-related knowledge and improve aspects of psychosocial function. Supportive technology did not improve quality of life, reduce health service use or decrease school absences. The poor methodological quality of current evidence and lack of involvement of users in product development contribute to the uncertainty that supportive technology is beneficial.

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.

This chapter contains section titled: Introduction Putting service developments into context Contributing to the evidence base Issues around diagnosis Beyond treatment Towards an integrated approach to TYA cancer care References

IntroductionSurvivors of childhood brain tumours have the poorest health-related quality of life of all cancer survivors due to the multiple physical and psychological sequelae of brain tumours and their treatment. Remotely delivered acceptance and commitment therapy (ACT) may be a suitable and accessible psychological intervention to support young people who have survived brain tumours. This study aims to assess the feasibility and acceptability of remotely delivered ACT to improve quality of life among these young survivors.Methods and analysisThis study is a two-arm, parallel group, randomised controlled trial comparing ACT with waitlist control at 12-week follow-up as the primary endpoint. Seventy-two participants will be recruited, who are aged 11–24 and have completed brain tumour treatment. Participants will be randomised to receive 12 weeks of ACT either immediately or after a 12-week wait. The DNA-v model of ACT will be employed, which is a developmentally appropriate model for young people. Feasibility will be assessed using the proportion of those showing interest who consent to the trial and complete the intervention. Acceptability will be assessed using participant evaluations of the intervention, alongside qualitative interviews and treatment diaries analysed thematically. A range of clinical outcome measures will also assess physical and mental health, everyday functioning, quality of life and service usage at 12-week follow-up. The durability of treatment effects will be assessed by further follow-up assessments at 24 weeks, 36 weeks and 48 weeks.Ethics and disseminationEthical approval was given by East Midlands, Nottingham 1 Research Ethics Committee (Reference: 20/EM/0237). Study results will be disseminated in peer-reviewed journals, through public events and relevant third sector organisations.Trial registrationISRCTN10903290; NCT04722237.

The effects of bereavement are unique and support must be individually tailored. The role of the general practitioner (GP) in paediatric cancer palliative care is wide-ranging and challenging, yet little is known about offered bereavement support in this context. We carried out an in-depth secondary analysis of text relating to bereavement support from a semi-structured interview study exploring GPs' and parents' experiences. Findings highlight the importance of early GP-initiated face-to-face contact with parents, exploring opportunities for innovative practice and maintaining close collaboration with hospital-based teams. A co-ordinated, equitable and sustainable approach to bereavement support may help address identified GP knowledge deficits and time-pressures.

Background: For adolescents and young adults living in high-income countries cancer remains the most common disease-related death. Increasing survival rates and projected longevity are positive outcomes, although long-term consequences of cancer and/or its treatment will likely increase the global burden of cancer. In low and middle-income countries the impact and needs of young adults with cancer are largely unknown and require further attention. However, universal studies have revealed that cancer-related needs for this group are multifactorial, complex and largely unmet. In response to these findings, the body of work on supportive care for young adults with cancer is growing. Yet, there is no published research in the context of the United Kingdom, regarding the role young adults play in managing their supportive cancer care needs. Objective: To explore the experience, purpose and meaning of supportive cancer care to young adults recently diagnosed with cancer. Design, setting and participants: Using constructivist grounded theory, data were collected in one to one interviews with eleven young adults (seven women and four men aged 19-24 years) being treated for cancer in two English hospitals. Data were analyzed using open and focused coding, constant comparison, theoretical coding and memoing, and this enabled construction of a subjective theory. Results: Young adults in this study interpreted cancer as an interruption to the events, experiences and tasks forming the biographical work of their adult identity. Data analysis led to the construction of the theory, ‘protecting an adult identity: self in relation to a diagnosis of cancer in young adulthood’. This theory arose from three categories: fragility of self, maintaining self in an altered reality and mobilizing external resources. Young adults faced the loss of their early adult identity. Interpreting cancer as a temporary interruption, they sought to re-establish their identity by directly and indirectly managing their supportive care needs. Conclusions: These findings contribute to the understanding of young adults’ desired purpose of supportive cancer care. There are also implications for how health and social care professionals provide supportive care interventions to meet the needs of this population.

Objectives: To understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16-40 years and how this might affect care. Design: We used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and workshops) informed by a preliminary programme theory: realist analysis of data within these themes enabled revision of our theory. A realist logic of analysis explored contexts and mechanisms affecting outcomes of care. Setting: Three cancer centres and associated palliative care services across England. Participants: We aimed for a purposive sample of 45 people with cancer from two groups: those aged 16-24 years for whom there may be specialist cancer centres and those 16-40 years cared for through general adult services; each could nominate for interview one family member and one healthcare professional. We interviewed three people aged 16-24 years and 30 people 25-40 years diagnosed with cancer (carcinomas; blood cancers; sarcoma;central nervous system tumours) with a clinician-estimated prognosis of less than 12 months along with nominated family carers and healthcare professionals. Nineteen bereaved family members and 47 healthcare professionals participated in workshops. Results: Data were available from 69 interviews (33 people with cancer, 14 family carers, 22 healthcare professionals) and six workshops. Qualitative analysis revealed seven key themes: loss of control; maintenance of normal life; continuity of care; support for professionals; support for families; importance of language chosen by professionals;financial concerns. Conclusions: Current care towards end of life for young adults with cancer and their families does not meet needs and expectations. We identified challenges specific to those aged 16-40 years. The burden that care delivery imposes on healthcare professionals must be recognised. These findings can inform recommendations for measures to be incorporated into services.

Background Nutrition support is essential in children with cancer, including those undergoing bone marrow transplant (BMT), to reduce the risk of malnutrition and associated deleterious outcomes. Enteral nutrition is more commonly provided via nasogastric than gastrostomy tubes due to safety concerns with the latter in immunocompromised children. This systematic review investigated the incidence and type of complications and outcomes in pediatric cancer patients fed by gastrostomy. Methods Databases were searched for randomized and observational studies investigating the use of any gastrostomy device in children aged

Purpose Low recruitment of adolescents and young adults in cancer clinical trials is widely reported and may be linked to limited improvements in survival. Research to date does not adequately explain all underlying reasons for poor trial accrual. This paper reports health professional perceptions of communicating with adolescents and young adults with bone sarcoma about clinical trial participation. Methods This study used narrative inquiry. Findings are reported from thematic analysis of in-depth interviews with 18 multidisciplinary health professionals working in a supra-regional bone and soft tissue sarcoma centre. Results Participants described professional expertise, the development of specialist knowledge and skills and strategies used to develop trusting relationships with adolescents and young adults with bone sarcoma. These factors were perceived to facilitate communication about clinical trial participation. Emergent themes were having credibility through expertise of the team, developing specialist communication skills through reflection on practice, having inclusive approaches to education and training about clinical trials, individual communication styles used to form trusting relationships, using a patient-centred approach to connect with adolescents and young adults, creating time needed to form trusting relationships and effective team working. Conclusions We aligned findings of this study with characteristics of patient-physician trust and provide a basis for transferable recommendations. Our findings can be used to inform the development of age-specific, specialist communication skills and highlight health professional education needs about clinical trials. Additional research is needed to explore which elements of team working optimise improved clinical trial participation, in what contexts and why.

Purpose: To describe the development and implementation of the specialist nurse key worker  role across 18 children’s cancer centres in the United Kingdom, and draw out significant factors  for success to inform future development of the role across a range of specialities.  Method: Data were obtained through 42 semi‐structured interviews and a focus group with 12  key workers. Framework analysis revealed two main themes: models of care and key workers’  perspectives of the role.  Results: Four models of care were identified and described, roles were organised along a  continuum of in reach and outreach with either the presence or absence of home visits and  direct delivery of clinical care. Key workers’ perspectives of the advantages of the role included:  coordination of care (being the main point of contact for families/professionals), experience  and expertise (communication/information) and the relationship with families. The main  challenges identified were: time, caseload size, geographical area covered, staffing numbers  and resources available in the hospital and community.  Conclusion: The label ‘key worker’ was disliked by many participants, as the loss of ‘specialist  nurse’ in the title failed to reflect professional group. Leaving aside terminology, key workers  shared core role elements within a continuum of in reach and outreach work and their  involvement in direct clinical care varied throughout the pathway. Irrespective of the model  they worked in, the key worker provided clinical, emotional, educational, and practical support  to families, through the coordination of care, experience and expertise and relationship with  families and professionals.

Mucositis assessment in children has primarily relied on assessment tools that have been developed for an adult population. A mucositis assessment scale for use in children has previously been developed from expert opinion, namely Children's International Mucositis Evaluation Scale (ChIMES). After the development of ChIMES, we aimed to evaluate the user perspective of the scale by testing the understandability, content validity, and overall acceptability of ChIMES working with parents, children, and teenagers as content experts. Overall acceptability of the scale was satisfactory; however, comments provided by the participants questioned several aspects of the initial version of ChIMES. After discussion of the results, a refined version of ChIMES was produced that accounts for the views of the target population

"Clinical skills are essential in the provision of care for children and young people. The Great Ormond Street Hospital Manual of Children and Young People's Nursing Practices provides expert guidance on evidence-based clinical procedures, helping students and newly registered nurses develop sound clinical judgement and confidence. This comprehensive resource covers all aspects of children's nursing, from the fundamentals of everyday practice to advanced care in high dependency and intensive care settings. As such, its relevance and usefulness reach beyond those newly registered; it remains a valuable resource for experienced nurses wishing to further expand their nursing skills. Now in its second edition, this thoroughly updated guide demonstrates each procedure, explains the underlying theory and evidence, and speaks to the unique challenges of working with children and young people. New chapters address mental health, complementary therapies, learning difficulties, and the deteriorating child, whilst expanded content examines blood glucose monitoring, glucocorticoid treatment, insulin administration, diabetes care, surgical diathermy, non-invasive ventilation, and much more"-- Includes bibliographical references and index.

Background The incidence of cancer diagnosed during pregnancy is increasing. Data relating to investigation and management, as well as maternal and foetal outcomes is lacking in a United Kingdom (UK) population. Methods In this retrospective study we report data from 119 patients diagnosed with cancer during pregnancy from 14 cancer centres in the UK across a five-year period (2016-2020). Results Median age at diagnosis was 33 years, with breast, skin and haematological the most common primary sites. The majority of cases were new diagnoses (109 patients, 91.6%). Most patients were treated with radical intent (96 patients, 80.7%), however, gastrointestinal cancers were associated with a high rate of palliative intent treatment (63.6%). Intervention was commenced during pregnancy in 68 (57.1%) patients; 44 (37%) had surgery and 31 (26.1%) received chemotherapy. Live births occurred in 98 (81.7%) of the cases, with 54 (55.1%) of these delivered by caesarean section. Maternal mortality during the study period was 20.2%. Conclusions This is the first pan-tumour report of diagnosis, management and outcomes of cancer diagnosed during pregnancy in the UK. Our findings demonstrate proof of concept that data collection is feasible and highlight the need for further research in this cohort of patients.

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 which 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 to 2022, four domains were identified through a narrative synthesis that reflected the 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 experience of the AC model from the patients’ perspective.

AIM: To describe the use of an innovative, multimethodological approach to exploring the day-to-day experiences of boys across a wide age range to better understand the effects of modern haemophilia treatment on their lives. BACKGROUND: Children and young people with severe haemophilia can now be treated with prophylaxis and potentially have a lifestyle close to that of those without haemophilia. However, boys frequently describe living with haemophilia as burdensome. DATA SOURCES: The study, based on a grounded theory approach, was conducted with boys aged four to 16 years old, using research methods that included photo-elicitation, 'draw and write' techniques, focus groups run by participant co-researchers and individual interviews. REVIEW METHODS: Grounded theory was used to enable rich data capture, through reshaping of research questions as theory developed. DISCUSSION: The effectiveness of the methods used is discussed, along with consideration of the issues raised. CONCLUSION: These methods are effective for use with children. They can result in robust data and are also fun for child participants. IMPLICATIONS FOR RESEARCH/PRACTICE: Understanding life with chronic disease from a child's perspective can improve clinical care through a better understanding of health behaviour and lifestyle implications.

This paper provides an overview of the EONS (European Oncology Nursing Study) core curriculum revision project. The aim of this project was to revise the EONS core curriculum for a Post-Basic Course in Cancer Nursing, first published in 1989, so that it would better reflect patient and family need and contemporary cancer nursing practice. A further aim of the project was to address the educational needs of both adult and paediatric oncology nurses. To achieve these aims a core curriculum revision meeting was organized and attended by representatives from most of the EU Member States. A rough draft of the core curriculum was developed, circulated and subjected to further scrutiny and modification. Following approval of the final draft, the core curriculum was translated from English into the 10 other official EU languages and made available in both paper and electronic form. The updated core curriculum was launched during the ECCO-10 conference and has now been disseminated widely amongst European cancer nurses and the wider nursing and medical community.

Background: Venepuncture for blood sampling is a needle-related medical procedure most feared by children. We sought to develop and evaluate a prototype ‘tool’ to help prepare for blood tests. Methods: A user-experience design, using creative arts/art making was utilized. Twenty-three children aged 4-12 with haematological conditions participated. Phase 1 involved children working with a professional illustrator to develop a blood preparatory ‘tool’. Phase 2 involved children using a paper prototype of the ‘tool’ and providing feedback. Results: Children indicated they wanted the ‘tool’ to be a game to use before blood tests. Drawing on the work carried out with children, and with input from our advisory group a Blood Quest game was developed. The game was designed to take children on a journey around the body, learning facts about the blood and completing simple blood related activities. Half of all children said they felt better about having their blood taken after playing the ‘Blood Quest’ game and half reported feeling the same. The majority of children who tested the game found it fun and informative, with 12 of the 16 participants reporting having learnt something new about the blood. Conclusions: The end product was well received. This small-scale pilot evaluation suggests that with further refinement, the game has the potential for young children to feel more informed and less frightened about having their blood taken.

There was a need to develop a mucositis instrument that would be specific for use with children. This paper describes the step of generating items in the process of developing a new instrument for the assessment of oral mucositis in children. Nine health care professionals with expertise in pediatric cancer, mucositis assessment, and oral assessment in children were invited to participate in a nominal group technique to generate items that should be included in an instrument. Thirty items were generated initially. Voting processes established that six of these items were thought to be necessary for inclusion: (1) presence of ulcers, (2) pain assessment, (3) amount of pain medication received, (4) effect on eating, (5) drooling-pooling of saliva, and (6) effect on drinking. Using these six items, an initial draft of an instrument was developed that could be used to assess oral mucositis in children, namely, the Children's International Mucositis Evaluation Scale. The six items generated by this process provided the basis for a simple, feasible, and reliable instrument. With increased clinical research investigating interventions to reduce and prevent oral mucositis, such an instrument will be critical to the effective conduct of this research in children. Further testing of this instrument is necessary.

Aim: Grief and its many manifestations can irrevocably change family life and the multiple relationships within. Informed by this, one is led to consider the extent an adult nurse provides a family focus to cancer care. It arguably remains wanting, particularly in adult healthcare environments where 'family' can still infer 'spouse' and the needs of children and young people at home may as a result go unrecognized. Little attention has been paid to what or how young people should be told about their parent's cancer diagnosis, but from the limited research that has been undertaken, parents are seeking help with this aspect of communication. Methods: An interpretative phenomenological approach was used to explore the research question: How do young people experience learning about their parent's cancer diagnosis? This was a single centre study recruiting seven participants, aged 14-18 years, which included two sets of siblings. Participants were interviewed on one occasion only. Results: The interview data revealed six dimensions of the young person's experience of learning about a parental diagnosis: first hearing about a parent's diagnosis; vulnerability of self and others, communication within the family, feeling supported in experience, experience and support of school, experience and support of hospital. Young people overwhelmingly advocate honesty and openness in family communication about cancer. Conclusions: Our participants demonstrated strength and resourcefulness in adapting to their parent's cancer. Meaning making was central to our study's intent and still today it offers a perspective of the diagnosis period that has not been fully explored in the extant literature. (C) 2009 Elsevier Ltd. All rights reserved.

This paper reports on data from the initial phase of a UK-wide study exploring life-limiting conditions (LLCs) in children where, because of their rarity, little is understood regarding the significant symptom challenges of families and care professionals who support them. In this initial phase, care professionals (n = 43) and families (n = 16) completed a survey to identify which rare LLCs present symptom challenges and which individual symptoms prove difficult to manage. Findings led to the prioritization of mucopolysaccharidoses, Batten Disease and leukodystrophy. Care professionals’ rationales for selecting these conditions included the presence of symptoms that are very difficult to manage, a requirement for additional clinical evidence to support symptom management, and the progressive nature of these diseases where symptoms frequently change and are difficult to predict. Families identified symptoms such as behavioural difficulties, visual impairments and communication impairments as those being most difficult to manage and having most impact on quality of life for children and families.

Children and young people (CYP) presenting with a mental health (MH) crisis are frequently admitted to general acute paediatric wards as a place of safety. Prior to the pandemic, a survey in England showed that CYP occupied 6% of general paediatric inpatient beds due to an MH crisis, and there have been longstanding concerns about the quality of care to support these patients in this setting. Mental Health Admissions to Paediatric Wards Study aims to generate a theory of change (ToC) model to improve the quality of care for CYP admitted to acute paediatric services after presenting in a MH crisis. We will undertake a national (England), sequential, mixed methods study to inform a ToC framework alongside a stakeholder group consisting of patients, families/carers and healthcare professionals (HCPs). Our study consists of four work packages (WP) undertaken over 30 months. WP1 is limited to using national routine administrative data to identify and characterise trends in MH admissions in acute paediatric wards in England between 2015- 2022. WP1 received ethical approval (Ref 23/NW/0192). We will publish the overall synthesis of data and the final ToC to improve care of CYP with MH crisis admitted to general acute paediatric settings. As coproducers of the ToC, we will work with our stakeholder group to ensure wide dissemination of findings. Potential impacts will be on service development, new models of care, training and workforce planning.

Objective: International recognition of the unique needs of young people with cancer is growing. Many countries have developed specialist age-appropriate cancer services believing them to be of value. In England, 13 specialist Principal Treatment Centres (PTC) deliver cancer care to young people. Despite this expansion of specialist care, systematic investigation of associated outcomes and costs has to date, been lacking. The aim of this paper is to describe recruitment and baseline characteristics of the BRIGHTLIGHT cohort, and the development of the bespoke measures of levels of care and disease severity, which will inform the evaluation of cancer services in England. Design: Prospective, longitudinal, observational study. Setting: Ninety-seven NHS hospitals in England. Participants: A total of 1,114 participants were recruited diagnosed between July 2012 and December 2014: 55% (n=618) male, mean age was 20.1 years (SD=3.3), most (86%) were white and most common diagnoses were lymphoma (31%), germ cell tumour (19%) and leukaemia (13%). Results: At diagnosis, median quality of life score was significantly lower than a published control threshold (69.7 points); 40% had borderline-severe anxiety, and 21% had borderlinesevere depression. There was minimal variation in other patient-reported outcomes according to age, diagnosis or severity of illness. Survival was significantly worse in the Cohort than for young people diagnosed during the same period who were not recruited (cumulative survival probability 4 years after diagnosis: 88% vs. 92%). Conclusions: Data collection was completed in March 2018. Longitudinal comparisons will determine outcomes and costs associated with access/exposure to PTCs. Findings will inform international intervention and policy initiatives to improve outcomes for young people with cancer.

BACKGROUND: There is an increasing prevalence of children/young people with long-term conditions (LTC) in the UK due to improvements in health-care management and delivery. These children are often involved, from an early age, in their own care and management; yet, there are little data to support how or when they develop the necessary skills and knowledge to become competent at this care. OBJECTIVE: This study aimed to understand self-management of haemophilia, from a child's perspective, in the 21st century in the UK where intensive prophylactic therapy is given from early childhood. DESIGN: A qualitative study using grounded theory to evaluate life-experiences of children and young people with haemophilia. SETTING AND PARTICIPANTS: Thirty boys aged 4-16 with severe haemophilia treated at a single paediatric haemophilia care centre were interviewed at home or in a focus group. INTERVENTION/VARIABLES: Multimethod qualitative research including age-appropriate research tools (draw and write, photo-elicitation and interviews) to facilitate data collection from children. RESULTS: Boys develop self-management skills over time. They learn from health-care professionals, their parents and other family members with haemophilia. DISCUSSION: Self-management skills (bleed recognition, self-infusion, self and medicines management, pain and risk management and conceptualizing preventative therapy) are developed through experiential learning and individualized education, and not through formalized expert patient programmes. CONCLUSION: The boys in this study have benefited from early prophylactic factor replacement therapy. They develop skills in haemophilia and self-management at a relatively young age and are experts in their own haemophilia care.

•Studies have shown variations in nutrition practices during bone marrow transplant.•Nasogastric tubes are the mainstay for provision of enteral nutrition.•Gastrostomy use in this setting is less common.•Similar approaches were shown for many aspects of nutritional support.•Despite the risk for infection, they WANTED to increase their use of gastrostomies. Objective: Previous surveys have shown deviations in nutritional practices from international guidelines during bone marrow transplant (BMT). Guidelines recommend enteral nutrition first-line and nasogastric tubes are the mainstay for its provision. Gastrostomies provide an alternative, yet their use is less common. This national survey investigated nutrition support practices in pediatric allogeneic BMT centers and compared clinicians’ opinions on gastrostomy use. The aim of this study was to identify the national picture of nutritional support practices across pediatric allogeneic BMT centers, including use and opinions of dietitians, clinical nurse specialists, and physicians, toward gastrostomy feeding. Methods: An online survey was administered to 12 centers. The lead dietitian answered questions regarding nutritional counseling, screening, assessment, and interventions. Questions regarding current use, perceived advantages, and problems of gastrostomies were answered by the dietitian, lead clinical nurse specialist, and physician. Results: A 100% response rate was achieved from 12 centers (N = 36 clinicians). Nutritional counseling was provided in 92% of centers before and routinely throughout admission, 83% screened on and regularly throughout admission, 83% assessed nutritional status before transplant, and 92% used enteral nutrition first-line. Forty-two percent of the centers used gastrostomies. In those not using gastrostomies, 76% of clinicians felt some children should be offered a gastrostomy. Clinicians perceived less displacements (78%) and cosmetic appearance (69%) as the most common advantages of gastrostomies over nasogastric tubes. Risks associated with surgery (92%) and tube/stoma complications (58%) were the most common perceived problems. Conclusions: A similar approach was shown on many aspects of nutritional support. Gastrostomy use divided opinion with differences in use and perceived advantages, but agreement on potential complications. Despite their risks, clinicians wanted to use gastrostomies more. Placement requires careful consideration of the risks, benefits, and family preferences.

The focus of work submitted to an international conference can reflect the changing landscape of a specialty and prove important for identifying trends, uncovering gaps, and providing new directions for nurse-led research and clinical practice. We present an analysis of trends in presentations in the nursing program at the SIOP congress from 2003 to 2012 based on all accepted abstracts. A total of 462 abstracts were analyzed. A data extraction form was used to ensure consistency of data retrieved. Paired researchers were assigned 2 years of abstracts for assessment: approximately 80–100 abstracts each. Data were entered into REDCap data management software. Most abstracts came from presenters affiliated with institutions in Europe and North America with a noticeably significant under-representation from developing countries. There was an equal representation of papers focused on empirical research with family members and clinical practice focused on the professional role, although this varied in some years. Analysis of research methodology revealed a predominance of surveys, with a recent increase in qualitative and mixed method studies. Out of all abstracts only 18% were subsequently published. Gaps have been identified, such as the limited involvement of nurses in developing countries, and lack of studies self-reporting from children. Much needs to be done to promote a greater diversity of research frameworks and more dynamic research designs. The small percentage of abstracts from nurses that are eventually published may hinder translation of the findings into clinical practice.

Introduction Growing consensus describes it as ‘inappropriate’ to deliver care to young people in either child or adult environments of care or in settings not equipped to meet their psychosocial needs. The aim of this review was to identify what patient and professional experience tells us about the culture of care specific to young people receiving cancer care in the UK. Methods A narrative review of published, UK-based research was conducted. Five online databases were searched using terms related to “culture of care”, “cancer” and “adolescent”. Papers were assessed for relevance, according to pre-determined criteria: 19/1366 identified papers met our inclusion criteria. Results Studies included in this review were predominantly reflective of care received in specialist units. The findings were in support of ‘young people-friendly’, ‘tailored environments’, showing how they facilitate young people to have positive experiences of care. Communication, information delivery and patient choice were themes that were central to the culture of care. Conclusion Highlighted was the need to provide care beyond addressing clinical needs through a young-person centred approach, to facilitate optimal experiences of care. However, to fully understand the culture of care, research needs to focus on the delivery of care outside of specialist units.

Review question We reviewed the evidence about what helps children with cancer to take part in decisions about their health care. We found no studies. Background Cancer is a serious illness that involves complex treatments with unpleasant side effects. Children with cancer generally prefer to be involved in some way in decisions about their care and treatment. Involving children in decisions about their health care can help their understanding of the disease and treatment, reduce their fears, help them feel more prepared and to cope better with their cancer. Study characteristics The evidence is current to 29 February 2016. We did not find any studies that helped children to participate in decision‐making with parents and healthcare staff. Key results At the moment, there is no evidence on ways of helping children with cancer take part in decisions about their health care. We need more high‐quality research before definitive conclusions can be made. Quality of the evidence Not applicable as no eligible studies were found.

Aim To share our experience of implementing a programme of interventions aimed at building research capacity and capability of nurses and allied health professionals in a specialist children's hospital. Background Clinicians at the forefront of care are well positioned to lead on research to improve outcomes and experiences of patients but some professional groups continue to be underrepresented. Inequities persist alongside robust national infrastructures to support Clinical Academic Careers for non-medical health professionals, further highlighting the need to address local infrastructure and leadership to successfully build research capacity. Design An evolving programme of inquiry and analysis was established in one organisation, this included targeted interventions to mitigate barriers and enable research capacity and capability. Methods An all-staff survey was conducted in 2015 to understand the existing research culture. Interventions were put in place, evaluated through a second survey (2018), and focus group interviews with staff who had accessed interventions. Results Respondents demonstrated high levels of interest and commitment to research at the individual level which were not always harnessed at the organisational level. Inequities between professional groups existed in terms of training, time to undertake research and opportunities and outputs. Follow-up revealed continuing structural barriers at an organisational level, however at an individual level, interventions were reflected in >30 fellowship awards; major concerns were reported about sustaining these research ambitions. Conclusions Success in building a research-active clinical workforce is multifactorial and all professional groups report increasing challenges to undertake research alongside clinical responsibilities. Individuals report concerns about the depth and pace of cultural change to sustain Clinical Academic Careers and build a truly organisation-wide research hospital ethos to benefit patients. Relevance to clinical practice The achievements of individual nurses and allied health professionals indicate that with supportive infrastructure, capacity, cognisance and capability are not insurmountable barriers for determined clinicians. We use the standards for reporting organisational case studies to report our findings (Rodgers et al., 2016 Health Services and Delivery Research, 4 and 1).

Objectives To conduct a UK-wide survey of young people who have experienced cancer, carers and professionals, to identify and prioritise research questions to inform decisions of research funders and support the case for research with this unique cancer population. Design James Lind Alliance Priority Setting Partnership. Setting UK health service and community. Methods A steering group oversaw the initiative and partner organisations were recruited. Unanswered questions were collected in an online survey. Evidence searching verified uncertainties. An interim survey was used to rank questions prior to a final prioritisation workshop. Participants Young people aged 13–24 years with a current or previous cancer diagnosis, their families, friends, partners and professionals who work with this population. Results Two hundred and ninety-two respondents submitted 855 potential questions. Following a refining process and removal of ‘out of scope’ questions, 208 unique questions remained. Systematic evidence checking identified seven answered questions and 16 were the subject of ongoing studies. The interim survey was completed by 174 participants. The top 30 questions were prioritised at a workshop attended by 25 young people, parents and multidisciplinary professionals. The top three priorities are: (1) What psychological support package improves psychological well-being, social functioning and mental health during and after treatment? (2) What interventions, including self-care, can reduce or reverse adverse short-term and long-term effects of cancer treatment? (3) What are the best strategies to improve access to clinical trials? The remaining questions reflect the complete cancer pathway: new therapies, life after cancer, support, education/employment, relapse and end-of-life care. Conclusions We have identified shared research priorities for young people with cancer using a rigorous, person-centred approach involving stakeholders typically not involved in setting the research agenda. The breadth of priorities suggest future research should focus on holistic and psychosocial care delivery as well as traditional drug/biology research.

Purpose: The overall aim was to evaluate the key worker role across principal treatment centres for children with cancer in England, Wales and Scotland.Methods: Mixed-methods case study gathering data from multiple perspectives using questionnaires, interviews, focus groups and reports/performance documents over a two-year period. Framework approach was adopted to analyse transcripts and documentary data. Results: Participants included: 22 nurse specialist key workers, 103 parents, 85 professionals and 10 children/young people. Qualitative and quantitative data were weaved together, to best illuminate key worker services. Four main models of care were described as well as the context of care and process of care.  Key working effectiveness centred around three pillars: care coordination; expert knowledge, experience and expertise; relationship. These were essential to improved family experience, emotional wellbeing, and delivery of individualised care closer to home. Conclusions: The role is complex and diverse, responding to local needs. Certain conditions, (e.g. high caseload) placed limits on enacting the three pillars, diminishing the positive experience of families. When they worked well, key workers reduced the fragmented nature of services and families placed great value on keeping the same key worker from diagnosis into long-term care. Retaining these roles, where already in place, or including, if not, we would recommend, factoring into budgets to sustain and expand such roles.

Background Children and young people (CYP) with learning disabilities (LD) are a vulnerable population with increased risk of abuse and accidental injury and whose parents have reported concerns about the quality, safety and accessibility of their hospital care. The Care Quality Commission’s (CQC) view of best practice for this group of patients includes: access to senior LD nurse provision; a clearly visible flagging system for identifying them; the use of hospital passports; and defined communication strategies13. What remains unclear is whether these recommendations are being applied and if so, what difference they are making. Furthermore, what we do not know is whether parental concerns of CYP with LD differ from parents of other children with long-term conditions. The aims of this study were to 1) describe the organisational context for healthcare delivery to CYP with LD and their families and 2) compare staff perceptions of their ability to identify the needs of CYP with and without LD and their families and provide high quality care to effectively meet these needs. Methods Individual interviews (n=65) and anonymised online survey (n=2261) were conducted with hospital staff working with CYP in 15 children’s and 9 non-children’s hospitals in England. The majority of interviews were conducted over the telephone and recorded and transcribed verbatim. Ethics approval was obtained and verbal or written consent for data collection was obtained from all interview participants. Results The nature and extent of organisational policies, systems and practices in place within hospitals to support the care of CYP with LD differs across England and some uncertainty exists within and across hospitals as to what is currently available and accessed. Staff perceived that those with LD were included less, valued less, and less safe than CYP without LD. They also reported having less confidence, capability and capacity to meet the needs of this population compared to those without LD. Conclusion Findings indicate inequality with regards the provision of high quality hospital care to children and young people with intellectual disabilities that meets their needs. There is a pressing need to understand the impact this has on them and their families.

Background: There is recognition that teenagers and young adults with cancer merit age-appropriate specialist care. However, outcomes associated with such specialist care are not defined. Patient experience and patient-reported outcomes such as quality of life are gaining importance. Nevertheless, there is a lack of theoretical basis and patient involvement in experience surveys for young people. Objective: We previously proposed a conceptual model of the lived experience of cancer. We aimed to refine this model adding to areas that were lacking or underreported. The proposed conceptual framework will inform a bespoke patient experience survey for young people. Methods: Using participatory research, 11 young people aged 13 to 25 years at diagnosis, participated in a 1-day workshop consisting of semistructured peer-to-peer interviews. Results: Eight core themes emerged: impact of cancer diagnosis, information provision, place of care, role of health professionals, coping, peers, psychological support, and life after cancer. Conclusions: The conceptual framework has informed survey development for a longitudinal cohort study examining patient experience and outcomes associated with specialist cancer care. Implications for Practice: Young people must be kept at the center of interactions in recognition of their stated needs of engagement, of individually tailored information and support unproxied by parents/family. Age-appropriate information and support services that help young people deal with the impact of cancer on daily life and life after cancer must be made available. If we are to develop services that meet need, patient experience surveys must be influenced by patient involvement. Young people can be successfully involved in planning research relevant to their experience.

BackgroundChildren undergoing bone marrow transplant (BMT) experience severe gastrointestinal toxicity. Most are unable to eat and drink putting them at risk of malnutrition. Additionally, they must take Herculean amounts of medication. To meet these demands, almost all children require a feeding tube. Two are typically used: nasogastric or gastrostomy. This qualitative study sought to gather children’s perspectives on having either of these tubes.MethodsThis study took place at a single UK centre over 18 months. Children able to talk about their tube were interviewed twice using creative methods. On admission, children were asked to draw a picture of themselves with their tube and say what they thought about it. Throughout admission children were offered a scrapbook to note anything they were feeling about their tube. This was used during their second interview once home. The lead researcher conducted all interviews and met families weekly throughout admission to build rapport. Interviews were transcribed and thematically analysed.ResultsSix children (all boys) who had a nasogastric, and three (two boys, one girl), a gastrostomy, were interviewed. Parents were present during interviews and helped their child express their thoughts, where needed. Both feeding tubes emerged as an asset, particularly to administer medications, which all the children disliked taking orally. Comfort was important and a primary preference for wanting a gastrostomy over nasogastric tube. Nasogastric tubes were initially uncomfortable, but children quickly got used to them.ConclusionEnsuring the child’s voice is heard through research is paramount to providing optimal healthcare but is often difficult in practice. Children in this study had good and bad days where they were, or were not, willing to talk about their tube. Building rapport was key to making the interviews work, as well as the help of nurses and play specialists through a multidisciplinary approach.

Background Few studies have explored young children's understanding of cancer and health-related behaviours yet this is essential to develop health promotion initiatives that build on young children's current knowledge levels and awareness. Method An exploratory descriptive design using the ‘draw and write’ technique was used to investigate children's views of cancer and health behaviours. The sample included 195 children aged eight to 11 years from five schools in deprived, affluent and rural locations in Scotland. Results When asked about cancer children demonstrated a good level of awareness by responding with text and drawings about the what they understood cancer to be; types of cancer; causes of cancer; what happens to people who have cancer; their personal experience of cancer and the emotions they associated with cancer. Older children, and children attending affluent schools, have more defined ideas about the causes of cancer and awareness of broader issues such as the risk of passive smoking or the potential impact on the family. Factors such as alcohol and illegal drugs were only reported by children attending schools in deprived locations. Children demonstrated considerable knowledge about healthy and unhealthy lifestyle behaviours; however, it is not clear whether this knowledge translates into their behaviours or the choices offered within their home environment. Conclusions Children view cancer in a negative way from an early age, even without personal experience. There is a need to demystify cancer in terms of its causes, how to recognize it, how it is treated and to publicize improved survival rates. There is a need for targeted and developmentally appropriate approaches to be taken to health education in schools, with an awareness of the influence of the media on children's information. Strategies should take into consideration the socio-economic and cultural contexts of children's lives which influence their choices and behaviours.

BACKGROUND: Despite significant advances in supportive care, children and families continue to face many challenges managing the consequences of cancer therapies. The purpose of this study was to explore the eating experiences of children, both at home and in hospital. OBJECTIVE: The objective of the study was to explore the perceptions and experiences of children and their families regarding food intake and discover how nutritional issues are managed by children and families. METHODS: A stratified sample was recruited according to stage in treatment journey, risk of developing nutritional problems, and aged 4 to 12 years undergoing chemotherapy at a cancer center in London, was recruited. This qualitative study involved the use of 2 key visual storytelling techniques: (1) photographs and drawings contained in a scrapbook or diary used as interview stimuli and (2) in-depth interviews with parents. RESULTS: Our study revealed a complex interplay between the context of care, added to an individual child's desires and nutritional needs that are constantly changing during therapy. Failures in the hospital system to meet the nutritional needs of children placed extra stress on parents to provide food for their children. CONCLUSIONS: A relaxed and creative approach to tempting and keeping children engaged with food and eating was a focus for parents, which avoided what they described as making a "big deal about it." Poor information meant that children and parents were not always prepared for the adverse effects of therapies. IMPLICATIONS FOR PRACTICE: This study contributes much to the emerging description of practice guidance and informs strategies that can be used by children and parents.

Higher levels of research activity within healthcare contexts are known to result in improvements to staff and patient satisfaction as well as treatment outcomes. In the United Kingdom (UK), clinical academic careers for allied health professionals (AHPs) are a key priority development area. This paper presents the results of a study which aimed to scope the research capacity of four AHP professions in a tertiary children’s hospital using the Research Capacity and Culture Tool. This tool captures individual’s views of success or skill for a number of research-related items within the three domains of individual, team and organisation. Response rate ranged between 45-71% across the four groups. Reported barriers to carry out research included a lack of time, clinical work taking priority, and lack of suitable backfill (i.e., employing a therapist to cover the clinical post for the AHP to complete research activity). Motivators, on the other hand, included skill development, career advancement, and increased job satisfaction. As a first step to strengthen research skills, a systematic process was used to devise a suite of supportive strategies targeting the individuals’ perceived gaps in their research abilities across four pillars (i) awareness, (ii) accessibility, (iii) opportunity and capacity, and (iv) knowledge and skills. This process drew on previously published accounts of successful research capacity and culture development as well as the unique needs of staff at this tertiary children’s hospital. The outcome of this process was a structured framework to support research capacity, culture and engagement. The specific details of this framework are reported in this paper in line with further recommendations to promote research capacity, culture and engagement amongst AHPs.

Survival gains in teenagers and young adults (TYA) are reported to be lower than children and adults for some cancers. Place of care is implicated, influencing access to specialist TYA professionals and research.Consequently, age-appropriate specialist cancer care is advocated for TYA although systematic investigation of associated outcomes is lacking. In England, age-appropriate care is delivered through 13 Principal Treatment Centres (TYA-PTC). BRIGHTLIGHT is the national evaluation of TYA cancer services to examine outcomes associated with differing places and levels of care. We aimed to examine the association between exposure to TYA-PTC care, survival and documentation of clinical processes of care. Prospective cohort study. 109 National Health Service (NHS) hospitals across England. 1114 TYA, aged 13-24, newly diagnosed with cancer between 2012 and 2014. Participants were assigned a TYA-PTC category dependent on the proportion of care delivered in a TYA-PTC in the first year after diagnosis: all care in a TYA-PTC (ALL-TYA-PTC, n=270), no care in a TYA-PTC (NO-TYA-PTC, n=359), and some care in a TYA-PTC with additional care in a children's/adult unit (SOME-TYA-PTC, n=419). Data were collected on documented processes indicative of age-appropriate care using clinical report forms, and survival through linkage to NHS databases. TYA receiving NO-TYA-PTC care were less likely to have documentation of molecular diagnosis, be reviewed by a children's or TYA multidisciplinary team, be assessed by supportive care services or have a fertility discussion. There was no significant difference in survival according to category of care. There was weak evidence that the association between care category and survival differed by age (p=0.08) with higher HRs for those over 19 receiving ALL or SOME-TYA-PTC compared with NO-TYA-PTC. TYA-PTC care was associated with better documentation of clinical processes associated with age-appropriate care but not improved survival.

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 to 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.

Teenage and young adult cancer services in England are centralised in 13 principal treatment centres (TYA-PTC). These ‘specialist services’ are designed to support caregivers as well as young people. Objectives: We sought to evaluate whether caregivers of young people with cancer had fewer unmet information and support needs if they had all/some care in a TYA-PTC. Methods: Participants in a cohort study of young people with cancer nominated their main carer to complete the BRIGHTLIGHT Carer Questionnaire, completed six months after diagnosis. Comparisons were made according to where young people’s care was delivered: all, some or no care in a TYA-PTC. Principal component analysis reduced the questionnaire to five dimensions, which were used as dependent variables in subsequent regression analysis. Results: Four hundred and seventy-six responses out of 514 returned questionnaires (92%) were included in the analysis. The majority of caregivers were white, middle aged, married/cohabiting mothers. Adjusted analysis indicated caregivers who had all/some care in a TYA-PTC had more satisfaction with support and also with services specifically provided for carers. Those who had some TYA-PTC care had greater satisfaction with information but less opportunity to be involved in decisions. Conclusions: Caregivers of young people who had no TYA-PTC care have the most unmet information and support needs. Implications for Practice: Nurses outside of the TYA-PTC need to be supported by the TYA-PTC in providing information/support for caregivers. When a young person is receiving care in multiple hospitals nurses need optimise opportunities for caregivers to be involved in decision-making.

Objectives To systematically identify and analyse published research exploring teenage and young adult experience of cancer to inform the development of a patient-reported outcome survey intended to explore if a correlation exists between specialist cancer care and quality of life for young people with cancer. Design Systematic review and meta-synthesis. Data sources Medline, CINAHL Plus and PsycInfo were searched for literature published between 1987 and 2011. Review methods Search terms included those for: population (e.g. teen, young adult); intervention (e.g. cancer); outcome (e.g. experience); and study type (e.g. qualitative). Inclusion criteria: adolescents and young adults were both represented; diagnosis of cancer; published in English; and used qualitative methods to report an aspect of the cancer experience. Studies were excluded if they were reporting: palliative care experience; secondary data; or proxy views, i.e. parent or health professional perspective. Methodological quality was assessed using Cesario criteria and meta-synthesis involved deconstruction and decontextualising findings to identify common themes. Results Three hundred and fifteen studies were identified, 17 fulfilled the inclusion criteria. Of these, most (59%), were assessed as being high quality, none were rated poor. Nine common themes were identified: psychosocial function, importance of peers, experience of healthcare, importance of support, impact of symptoms, striving for normality, impact of diagnosis, positive experiences, and financial consequences. Conclusions The conceptual model developed from the meta-synthesis depicts the mediators and consequences of cancer care that impact on young people's quality of life after a cancer diagnosis. The model highlights areas that require further exploration.

AIMS AND OBJECTIVES: An action research study was undertaken to explore the development of the nurse consultant role when caring for children and young people. BACKGROUND: Five nurse consultants in different areas of specialist care in a tertiary paediatric hospital undertook the study when implementing the new role of nurse consultant into the hospital. METHODS: Action research meetings took place over a year. The nurse consultants then collated and analysed data using thematic analysis during the second year. A research fellow facilitated meetings, carried out participant observation, and coordinated the action research project. RESULTS: Data analysis revealed 22 subthemes grouped into four overarching themes: shaping the role; shaping child-centred care through consultancy; taking responsibility for practice; and leadership. These roles and their ease and complexity within the nurse consultant role are examined in further detail in this paper. Balancing the four key components in a newly developing role was initially complex and required support. Over time the nurse consultants developed the necessary skills to perform fully in all areas. A major challenge was developing the research role, a key function of the nurse consultant role. By the end of the study, all nurse consultants were actively embarking upon their own research either in preparation for or as part of Doctoral studies. CONCLUSIONS AND RELEVANCE TO CLINICAL PRACTICE: While there are many similarities with nurse consultants in adult practice, one major difference was the nurse consultant role in supporting families when caring for children and young people. This meant having a three-way communication style: with the family, the child/young person, and other healthcare professionals. This communication style was observed by the research fellow in participant observation of the nurse consultants undertaking clinical care and is described further in the analysis of the role.

Objectives Juvenile Dermatomyositis is a rare, chronic autoimmune condition of childhood with known psychosocial implications. This study sought to establish current psychology support for children and young people across the United Kingdom with rheumatic conditions, with a specific focus on those with Juvenile Dermatomyositis. Methods Electronic surveys were distributed to the 15 centres that belong to the Juvenile Dermatomyositis Research Group in the United Kingdom, collecting responses from health care professionals in the fields of medicine, nursing and psychology. Results One hundred percent of professionals from medicine and nursing replied from all 15 centres. Of these, 7 (47%) did not have a named psychologist as part of their rheumatology team, despite the majority, 13 (87%) having more than 200 paediatric rheumatology patients. Of the remaining centres, hospital psychology provision varied considerably. When rating their service, only 3 (8%) out of 40 professionals scored their service as a 5, (where 1 is poor, 5 is excellent): there were wide discrepancies in these scores. Many challenges were discussed, including limited psychology provision, lack of time and difficulties of offering support across large geographical areas. Conclusion Many of the challenges discussed are applicable to other centres worldwide. Suggestions have been proposed which may help to improve the situation for children and young people with rheumatic conditions, including Juvenile Dermatomyositis. Based on these findings, we suggest that rheumatology teams maximise use of these data, to advocate and work towards more comprehensive psychology provision and support in their individual centres.

The aim of the study was to identify factors affecting health-related quality of life (HRQL) in adolescents after liver transplantation. HRQL was measured using the CHQ-CF87 in 55 adolescents, aged 12-18 years. Factors associated with HRQL included allograft morbidity, psychological and family-related variables measured through standardized questionnaires. The domains of the CHQ-CF87 were reduced using factor analysis to give physical, psychological and social domains. Impacting factors were identified through stepwise, multiple regression analysis. Adolescents had significantly lower HRQL in every domain except for role/social-behavior and family cohesion compared to the general population. Adolescents experienced median 18 (range 4-31) symptoms related to immunosuppression, 40(75%) had one or more chronic illnesses related to immunosuppression and 12(22%) had a history of emotional difficulties. Self-esteem and emotional health were similar to the general population but behavior and aspects of family function were lower. Following regression analysis, the factors associated with HRQL were: age at transplant, secondary chronic illness, symptom distress, headaches, history of emotional difficulties, self-esteem and family conflict. These explained 57% of the variance in physical function, 61% of psychological function and 39% of social function. HRQL is significantly reduced in adolescents after transplantation, which could be related to immunosuppression and psychosocial factors.

A scoping exercise to define the preferred competencies of professionals involved in teenage and young adult (TYA) cancer care. Data were generated during two workshops with health professionals. In groups, they ranked skills, knowledge and attitudes, previously identified through a literature search, onto a diamond template. Data were also used from an education day with TYA professionals, who generated lists of key skills, knowledge and attitudes. Individually, professionals then selected the top five areas of competence to care for young people with cancer. The workshops generated three diamonds, which exhibited agreement of 13 principle skills, knowledge and attitudes. The top two being: 'expertise in treating paediatric and adult cancers' and 'understanding cancer'. The data from the education day suggested communication, technical knowledge and teamwork as being core role features for professionals who care for young people with cancer. Integration of both datasets; one derived inductively, the other deductively provides a comprehensive outline of core skills health professionals require to be proficient in young people's cancer care. These results will form the basis of future discussion around workforce strategies and inform a Delphi survey.

Background: Congenital heart disease (CHD) is the most common class of birth defects, which encompasses a broad spectrum of severity ranging from relatively minor to extremely complex. Improvements in surgery and intensive care have resulted in an increasing number of infants with the most complex lesions surviving after surgery until the time of discharge from the hospital, but there remain concerns about out-of-hospital mortality, variability in how services are provided at the time of discharge and beyond, and difficulties experienced by some families in accessing care. Objective: As part of a mixed-methods program of research, this study aimed to elicit parental experiences of caring for a child with CHD after hospital discharge following a cardiac surgery and collect information to inform interviews for a subsequent stage of the project. Methods: A closed online discussion group was set up via the main Facebook page of the Children’s Heart Federation (CHF), a national charity offering support to children with heart disease and their families. The discussion group was advertised through the charity’s webpage, and interested participants were directed to the charity’s Facebook page from where they could access the closed Facebook group and respond to questions posted. The CHF moderated the forum, and the research team provided questions to be posted on the forum. Responses were collated into a single transcript and subjected to thematic analysis. Results: The forum was open for 4 months, and 91 participants (mean age 35 years, range 23-58 years, 89 females, 89 parents, and 2 grandparents) submitted demographic information and were given access to the closed forum group. A common experience of isolation emerged from the data, with descriptions of how that isolation was experienced (physical, social, knowledge) and its psychological impact, together with the factors that made it worse or better. Woven through this theme was the notion that parents developed expertise over time. Conclusions: The use of an online forum provided a means for eliciting data from a large number of parents regarding their experiences of caring for their child after hospital discharge following cardiac surgery. Parents engaged with the forum and were able to articulate what went well and what went less well, together with sharing their stories and supporting each other through doing so. Some parents clearly found participating in the forum a positive experience in itself, demonstrating the potential of social media as a mechanism for providing support and reducing isolation. Information gained from the forum was used to shape questions for interviews with parents in a subsequent phase of the study. Furthermore, the themes identified in the online forum have contributed to identifying ways of improving the provision of care and support for parents of high-risk babies following discharge after cardiac surgery.

Background: Objective was to determine whether pharmacological interventions reduce the severity of fatigue in patients with cancer or hematopoietic stem cell transplant (HSCT) recipients as compared to control interventions. Methods: We conducted a systematic review and searched MEDLINE, Embase, Cochrane Central Register of Controlled Trials, CINAHL and PsychINFO for randomized trials of systemic pharmacological interventions for the management of fatigue in patients with cancer or HSCT recipients. Two authors independently identified studies and abstracted data. Methodological quality was assessed using the Cochrane Risk of Bias tool. Primary outcome was fatigue severity across different fatigue scales. Data were synthesized with random effects models. Results: There were 117 trials (19,819 patients) included. Pharmacological agents were: erythropoietins (n=31); stimulants (n=19); L-carnitine (n=6); corticosteroids (n=5); anti-depressants (n=5), appetite-stimulants (n=3) and other agents (n=48). Erythropoietin (standardized mean difference (SMD) -0.52, 95% confidence interval (CI) -0.89 to -0.14) and methylphenidate (SMD -0.36, 95% CI -0.56 to -0.15) significantly reduced fatigue while modafinil/armodafinil and corticosteroids were not effective. Conclusions: Erythropoietin and methylphenidate significantly reduced fatigue severity in patients with cancer and in HSCT recipients. Concerns regarding the safety of these agents may limit their usefulness. Future research should identify effective interventions for fatigue with minimal adverse effects.

Introduction One of the ‘arts’ of age-appropriate care for adolescents and young adults (AYA) with cancer is a holistic approach to delivering care, which relies on the knowledge, skills and attitudes of all healthcare professionals (HCP). Aim The paper aims to describe the five ‘Es’ enabling holistic competence. Methods Data were collected across four specialist AYA services (21 hospitals) in a multi-site case study; using semi-structured interviews with 29 AYA and 40 HCPs, focussed ethnography and observation (120 hours). Data were analysed through thematic and framework analysis. Results HCP holistic competence was enabled by the five ‘Es’: Exposure to experience continuum: dependent on the AYA case load of the care setting. More contact with AYA facilitated knowledge in needs beyond clinical treatment. Enthusiasm: vital with smaller caseloads of AYA. Interest in the speciality heightened holistic knowledge, often created through leadership. Environment: a specialist environment to meet AYA psychosocial needs increased HCPs ability to support AYA holistically. Education: occurred on three levels: raising awareness of AYA needs, in–house education, and formal training in AYA care. Ethos: core to culture of care was a whole–team approach recognising individuality, empowering, and promoting normality for AYA. Discussion and conclusion HCP holistic competence was dependent on the level of contact with AYA: a continuum from infrequent exposure to AYA, to substantial experience in specialist services. This contact level was related to the care environment (non-specialist or specialist) and together with enthusiasm for the speciality, was a key factor in the creation of a holistic, AYA-focussed ethos of care. Centralising AYA cancer services would increase the experience HCPs have of working with AYA, within age-appropriate environments of care, thus fostering an ethos of care sensitive to AYA holistic needs. Whether this impacts outcome will become evident in early 2019 when the results of BRIGHTLIGHT are released.

Purpose: Teenage and young adult cancer care in England is centralised around 13 principal treatment centres, alongside linked ‘designated’ hospitals, following recommendations that this population should have access to ‘age-appropriate care’. The term ‘age-appropriate care’ has not yet been defined: it is however the explicit term used when communicating the nature of specialist care. The aim in this study was to develop an evidence-based, contextually relevant and operational model defining ‘age-appropriate care’ for teenagers and young adults with cancer. Patients and methods: A mixed methods study was conducted comprising (i) semi-structured interview data from young people with cancer and healthcare professionals involved in their care (ii) an integrative literature review to identify current understanding and use of the term ‘age-appropriate care’ (iii) synthesis of both sets of data to form a conceptual model of age-appropriate care. A combination of qualitative content, thematic and framework analysis techniques were used to analyse and integrate data. Results: Analysis and synthesis across data sources enabled identification of seven core components of age-appropriate care, which are presented as a conceptual model: best treatment; healthcare professional knowledge; communication, interactions and relationships; recognising individuality; empowering young people; promoting normality; and the environment. Sub-themes of healthcare professional clinical and holistic expertise and the environment comprising of both physical and social elements also emerged. Conclusion: The proposed model, necessarily constructed from multiple components, presents an evidence-based, comprehensive structure for understanding the nature of ‘age-appropriate care’. It will be useful to clinicians, health service managers and researchers who are designing, implementing and evaluating interventions that might contribute to the provision of age-appropriate care. While the individual elements of age-appropriate care can exist independently or in part, age-appropriate care is optimal when all seven elements are present, and could be applied to the care of young people with long-term conditions other than cancer.

This paper presents the results of a study talking to children and young people affected with severe haemophilia A and/or haemophilia B about their knowledge and understanding of genetics and inheritance. These data were gathered in a qualitative study using semi-structured interviews with thirty boys aged four to sixteen discussing the impact of haemophilia on their lives. Responses were tape recorded, transcribed and analysed, using thematic analysis; one of the themes identified was genetic knowledge which is presented in this paper. Genetic knowledge was formed within the context of normal day-to-day lives within families affected by haemophilia, with parents and haemophilia centre staff being sources of information about individual inheritance patterns as well as providers of information about the future genetic impact of having haemophilia.

Background: 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. Methods: Participants aged 13-24 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. Results: 830 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

Purpose: Teenage and young adult cancer care in England is centralized around 13 principal treatment centers, alongside linked "designated" hospitals, following recommendations that this population should have access to age-appropriate care. The term age-appropriate care has not yet been defined; it is however the explicit term used when communicating the nature of specialist care. The aim of this study was to develop an evidence-based, contextually relevant and operational model defining age-appropriate care for teenagers and young adults with cancer. Materials and methods: A mixed-methods study was conducted comprising 1) semi-structured interview data from young people with cancer and health care professionals involved in their care; 2) an integrative literature review to identify the current understanding and use of the term age-appropriate care; 3) synthesis of both sets of data to form a conceptual model of age-appropriate care. A combination of qualitative content, thematic and framework analysis techniques was used to analyze and integrate data. Results: Analysis and synthesis across data sources enabled identification of seven core components of age-appropriate care, which were presented as a conceptual model: best treatment; health care professional knowledge; communication, interactions and relationships; recognizing individuality; empowering young people; promoting normality; and the environment. Subthemes emerged which included healthcare professionals clinical and holistic expertise, and the environment comprising both physical and social elements. Conclusion: The proposed model, necessarily constructed from multiple components, presents an evidence-based comprehensive structure for understanding the nature of age-appropriate care. It will be useful for clinicians, health service managers and researchers who are designing, implementing and evaluating interventions that might contribute to the provision of age-appropriate care. While the individual elements of age-appropriate care can exist independently or in part, age-appropriate care is optimal when all seven elements are present and could be applied to the care of young people with long-term conditions other than cancer.

ObjectiveTo systematically review the literature describing children and young people (CYP) admissions to paediatric general wards because of primary mental health (MH) reasons, particularly in MH crisis.DesignPubMed, Embase, PsycINFO, Web of Science and Google Scholar were searched, with no restriction on country or language. We addressed five search questions to inform: trends and/or the number of admissions, the risk factors for adverse care, the experiences of CYP, families/carers and healthcare professionals (HCPs) and the evidence of interventions aimed at improving the care during admissions.Two reviewers independently assessed the relevance of abstracts identified, extracted data and undertook quality assessment. This review was registered with PROSPERO (CRD42022350655).ResultsThirty-two studies met the inclusion criteria. Eighteen addressed trends and/or numbers/proportions of admissions, 12 provided data about the views/experiences of HCPs, two provided data about CYP’s experiences and four explored improving care. We were unable to identify studies examining risk factors for harm during admissions, but studies did report the length of stay in general paediatric/adult settings while waiting for specialised care, which could be considered a risk factor while caring for this group.ConclusionsMH admissions to children’s wards are a long-standing issue and are increasing. CYP will continue to need to be admitted in crisis, with paediatric wards a common location while waiting for assessment. For services to be delivered effectively and for CYP and their families/carers to feel supported and HCPs to feel confident, we need to facilitate more integrated physical and MH pathways of care.PROSPERO registration numberCRD42022350655.

Background: Children undergoing bone marrow transplant (BMT) are at risk of developing malnutrition. A feeding tube becomes a requirement for most children to meet their nutritional and medication requirements. Two tubes are typically used: nasogastric tube (NGT) or gastrostomy. At the UK center where this study took place, parents are offered a choice between these tubes. Objective: This qualitative data collection in a mixed methods study explored why parents choose either tube and their experiences of using it. Methods: Parents participated in 2 semistructured interviews. First, on admission to explore why they chose either tube. Second, 1–2 months postdischarge to explore their experience of using the tube. Interviews took place over 18 months. Transcripts were thematically analyzed. Results: Sixteen parents whose child had an NGT, 17 a gastrostomy, were interviewed. Choice was experienced across a continuum of difficulty and freedom. Many parents deferred to the expertise of professionals; others felt they were the experts in their child. Influential factors in decision-making included expected duration of need, the child’s age and activity, cosmetic differences, balancing gastrostomy surgery against NGT dislodgement, lay advice, healthcare professionals’ recommendations and prior tube feeding experiences. Conclusions: Parents valued choice appreciating 1 feeding tube might not suit every child. Implications for Practice: Choice of a gastrostomy or NGT should be offered to children prior to BMT. What is Foundational: Parents navigate a complex decision-making process when choosing a feeding tube for their child. Healthcare professionals can facilitate informed decision-making through collaborative discussions, inclusion of peer support, and provision of balanced information.

OBJECTIVE: This qualitative study set in the West Midlands region of the United Kingdom, aimed to examine the role of the general practitioner (GP) in children's oncology palliative care from the perspective of GPs who had cared for a child with cancer receiving palliative care at home and bereaved parents. METHODS: One-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents following the death. A grounded theory data analysis was undertaken; identifying generated themes through chronological comparative data analysis. RESULTS: Similarity in GP and parent viewpoints was found, the GPs role seen as one of providing medication and support. Time pressures GPs faced influenced their level of engagement with the family during palliative and bereavement care and their ability to address their identified learning deficits. Lack of familiarity with the family, coupled with an acknowledgment that it was a rare and could be a frightening experience, also influenced their level of interaction. There was no consistency in GP practice nor evidence of practice being guided by local or national policies. Parents lack of clarity of their GPs role resulted in missed opportunities for support. CONCLUSIONS: Time pressures influence GP working practices. Enhanced communication and collaboration between the GP and regional childhood cancer centre may help address identified GP challenges, such as learning deficits, and promote more time-efficient working practices through role clarity. Parents need greater awareness of their GP's wide-ranging role; one that transcends palliative care incorporating bereavement support and on-going medical care for family members.

BACKGROUND: Observing and recording the signs and symptoms of oral mucositis are an important part of oral care, essential to the prevention and treatment of mucositis. Structured oral assessment enables a more informed and accurate identification of signs and symptoms and will enable early and individualized interventions. OBJECTIVE: A United Kingdom-based mouth-care group conducted a systematic review of the published literature through to March 2004 and repeated in 2008. The goal of this review was to identify and evaluate the range of instruments used to assess oral mucositis to recommend in evidence-based guidelines the "best" instrument to use in the field of children's and young people's cancer care. METHODS: Search sources included the Cochrane Library, MEDLINE, EMBASE, and CINAHL. Studies were selected using defined criteria and reviewed by 3 pairs of group members. RESULTS: Fifty-four individual oral assessment instruments were identified with only 15 reporting evidence of reliability and validity testing. Only 3 articles reported on oral assessment exclusively in our population. CONCLUSIONS: The guidelines recommend only 1 assessment instrument, the Oral Assessment Guide, or adaptations of this instrument, to be used in clinical practice. Five factors influenced this recommendation: purpose of assessment, population, outcomes assessed, and quality of the instrument and ease of use. IMPLICATIONS FOR PRACTICE: The Oral Assessment Guide has been consistently judged to be user-friendly and appropriate for everyday clinical practice with both adults and children, as well as a useful research tool.

Like other health-related disciplines, nursing is under pressure to demonstrate the value of research and its impact on clinical practice. Research led by nurses has evolved over the last two decades due to positive research cultures in nursing, the availability of funding, the development of new nursing programs, and leadership support. However, variations in nursing research productivity are reported across countries. The role of the cancer nurse has rapidly shifted from routine bedside care to more advanced practice specialist nurses being responsible for performing invasive procedures, screening for cancer, and providing high-quality care based on evidence-based research. These cancer nursing research programs aim to improve the quality of care and services provided to cancer patients by using a research-based approach. Nursing leaders also recognize the need to combine practice with research since nursing research significantly contributes to improving and developing cancer patient care. Previous work presents factors influencing nurse-led cancer research development, however, it is important to consider the future direction of nurse-led cancer research, in terms of what has been done frequently, areas of care that need more research attention, and structural issues that may be endemic in nurse-led cancer research. There is a dearth of research evaluating nurse-led cancer research trends which is important in developing research agendas, justifying research investment and building research capacity. Maree et al summarised cancer nursing studies led by African nurses between 2005 and 2014. They found that African nurses published only 50 cancer-related research papers in that time and most adopted a quantitative approach. Sun and Larson also assessed nurse led research conducted in Africa and identified 73 research papers from five countries; most adopted a qualitative stance, which is a common approach in the early development of nursing that focuses on patient experiences through small scale studies. The only review that considered worldwide cancer nursing publications was conducted by Molassiotis et al, covering the years 1994 to 2003. They reported that most published research originated from high-income countries, and two-thirds of the studies adopted a quantitative approach, suggesting that the specialty has used a positivist approach as a research paradigm to develop its evidence-base. Since then, there have been many developments in cancer nursing that necessitate another assessment of the trends and gaps in nurse-led cancer research to provide more direction for future research. This would be useful for funders, research teams and organizations to inform the focus of research efforts where gaps exist. Thus, this study sought to provide a comprehensive, up-to-date synthesis of all nurse-led cancer research publications across both children and adults. Specific objectives for the analysis included: a) Provide an overview of the characteristics of papers published in terms of type and focus; b) Conduct a performance analysis in terms of trends, key journals for publication, co-authorship or most productive institutions, and c) Conduct a keyword analysis to identify research foci and changes of such foci over time.

This two-part review provides a comprehensive summary of clinical and research literature on paediatric liver transplantation. Part 1 outlines the peri-operative issues of liver transplantation, covers a brief history, discusses the indications and methods of transplantation and outlines the physical complications which can occur either as a result of the surgery or the subsequent immunosuppressive therapy required to maintain graft integrity. Post-liver transplantation care may require prolonged admission in hospital due to the complications that can occur during surgery and as a result of immunosuppression. This can have a further impact on the emotional status of the child and family. Health care professionals in all settings require greater knowledge about paediatric liver transplantation, its associated complications and long-term health implications.

The measurement of QoL has become an important area for research in paediatric transplantation over the past 15 yr. While much of this work remains descriptive and exploratory, advances in treatment and the trend towards outcomes being patient centred and not just survival based suggest the measurement of QoL will be of far more importance and relevance in the future. In this discussion article, we will outline some of the issues that need to be considered when embarking on a QoL study. The aim of our account is not to be prescriptive, rather to present researchers and clinicians with questions and possible solutions to help increase the scientific robustness of future studies. We have included summary tables of instruments that are currently available as a resource for those wanting to evaluate QoL in paediatric transplantation.

Clinical placements are an essential part of pre-registration nurse education. Mentors have a vital role in providing constructive feedback and assessing the student throughout their placement. There have been reports of failing to fail students in practice, however, little evidence has been provided to support this. This paper provides an insight into apparent mismatches between mentor feedback given to students in their practice assessment documents and feedback given to university and Trust staff anonymously. Our findings appear to illustrate issues of inconsistency and a lack of ability to give accurate feedback on professional values and behaviours. This is in contrast to the feedback on clinical skills - in which the mentors appeared to be in agreement, with the written comments being supported by congruent scores in the relevant competencies.

This study aimed to: 1) explore views of known experts leading on transition, 2) gather insights on the essential features of transitional care models, 3) highlight opportunities for and barriers to change: to inform core elements of benchmarks for transitional care. We held three workshops (n=20), and used a telephone interview (n=1) with health and social care professionals with expertise working with young people with a range of health conditions and disabilities. The workshops included individual brainstorming, and group discussion. Data were analysed using qualitative content analysis. The general consensus from stakeholders’ discussions about transition was that, ‘things have become stuck’. Themes included: professionals’ attitudes towards and knowledge about young people and transition, organisational barriers and ‘lack of joined up thinking’ between services. Our work offers further insight into experts’ perceptions of transition services within the United Kingdom. It is clear there is still much to be done to improve transition, to better meet the needs of young people and parents and begin to offer equitable access to transitional care programmes. The benchmarks offer a starting point for professionals seeking to improve transition through enabling the identification of gaps in services and providing a platform to share successful practice initiatives.

The aims of this paper are to describe the ongoing development of teenage and young adult cancer (TYA) services within the European Union, and develop consensus on key areas within the field. This survey used an e-Delphi design. An initial survey was distributed via email to professionals working in Europe. A snowball sampling technique was used to promote distribution. Consensus was sought over three rounds from October 2012 – April 2015. Consensus was defined as > 80% agreement (“agree” or “strongly agree”). Sixty professionals participated in round one, 106 in round two and 61 in round three. Twenty-six countries were represented across all rounds. Consensus was achieved for; the need for national policy guidance, the importance of patient choice, the validity of the International Charter of Rights for Young People and some aspects of multi-disciplinary working. There was 75% agreement on a single definition of the patient age range within TYA cancer care. European professionals with expertise in TYA cancer care reached consensus upon key elements of care for this group. The optimal TYA age-range remained an elusive topic on which to agree. The broad engagement and interest in TYA cancer across the EU through the ENCCA network was also demonstrated.

Advances in treatment mean children are increasingly cared for by their parents at home, leading to a shift in responsibility from health care professionals to parents. Little is known about parents' pain management experiences and the etiology of pain experienced by children with cancer especially when at home. A rapid review of the literature was undertaken investigating children's cancer-related pain, with emphasis on the management of pain outside the health care setting. Electronic databases were searched and a quality assessment was conducted. Forty-two articles were included. Despite advances in pain management techniques, children with cancer regularly cite pain as the most prevalent symptom throughout the cancer trajectory. The source of pain is usually treatment side effects or painful procedures. Parents find dealing with their child's pain distressing and demanding and may hold misconceptions about pain management. Findings indicate a need for more robust research into parental pain management leading to the development of effective pain management resources for parents.

Healthcare transition involves the purposeful and planned process of preparing, empowering and supporting young people with long-term conditions and their families when they are moving from child to adult services. Transition is a series of events that provides the young person with the knowledge and skills they require to be able to function in adult services. Until recently little has been done to address the perceived barriers and challenges involved in transition. In this article, the authors discuss the challenges associated with effective transition and describe their experience of implementing a healthcare transition pathway using a quality improvement model.

Importance: Evidence relating to the presenting symptoms of adolescent and young adults with cancer can support the development of early diagnosis interventions. Objective: To examine common presenting symptoms in adolescents and young adults aged 12–24 years subsequently diagnosed with cancer and potential variation in time to help-seeking by presenting symptom. Design: Cross-sectional analysis of the BRIGHTLIGHT cohort. Information on 17 pre-specified presenting symptoms and the symptom-onset-to-help-seeking interval (patient interval) was collected through structured face-to-face interviews and linked to national cancer registry data. Setting: Multi-centre study across English hospitals. Exposures: Self-reported presenting symptoms. Main Outcomes and Measures: Frequencies of presenting symptoms and associated ‘symptom signatures’ by cancer group. Proportion of patients with each presenting symptom whose patient interval was greater than one month. Results: The study population consisted of 803 adolescents and young adults with valid symptom information (55% male, 63% aged 19–24 years, and 88% white ethnicity). The number of symptoms varied by cancer group: for example, 86% of leukaemia patients presented with two or more symptoms while only 31% of melanoma patients presented with multiple symptoms. In total, 352 unique symptom combinations were reported, with the 10 most frequent combinations accounting for 38% of patients. Lump or swelling was reported by over half the patients (prevalence (95% CI): 52% (49–56%)). Other common presenting symptoms across all cancers were extreme tiredness (38% (35–42%)), unexplained pain (35% (32–38%)), night sweats (24% (21–27%)), lymphadenopathy (24% (21–27%)), and weight loss (24% (21–27%)). The relative frequencies of presenting symptoms also varied by cancer group; some symptoms (such as lump/swelling) were highly prevalent across several cancer groups (seen in >50% of patients diagnosed with lymphomas, germ cell tumours, carcinomas, bone tumours, and soft-tissue sarcomas). Over one in four patients (27%) reported a patient interval longer than one month: this varied from 6% (fits/seizures) to 43% (recurrent infections). Conclusions and Relevance: Adolescents and young adults with cancer present with a broad spectrum of symptoms, some of which are shared across cancer types. The findings point to discordant presenting symptom prevalence estimates when information is obtained from patient report versus health records.

Background Parents of children who are diagnosed with a poor-prognosis cancer want to be involved in making treatment-related decisions for their child. They often make repeated decisions depending on their child’s response to treatment and can experience decisional regret as a consequence. Understanding parent values and preferences when making treatment-related decisions may help enhance discussions with healthcare professionals and identify additional ways of providing support to this parent population. Objectives To explore parent values and preferences underpinning treatment decision-making for children receiving cancer-directed therapy for a poor prognosis cancer. Methods A scoping review of research literature and systematic reviews from qualitative, quantitative, and mixed methods studies was conducted following Joanna Briggs Institute methodology. Articles which included parents of a child who received cancer-directed therapy for a poor-prognosis childhood cancer, under the age of eighteen years were considered. Four electronic databases were searched (CINAHL, Medline, PsychINFO, Web of Science Core Collections). Reference and citation lists of all included full-text articles were also searched. Summative content analysis was used to synthesise findings and develop themes. Results Twelve articles were included. Parent decision-making was affected by underpinning factors: hope for a cure, fear of their child dying and uncertainty. Influencing factors: opinions of others, child’s wishes, and faith and religion had the potential to inform decision-making processes. Parents valued having enough time, being a good parent and being involved in decision-making. Preferences within these values varied resulting in the potential for conflict and ‘trade-offs’ in making decisions. Conclusions Parent decision-making in poor-prognosis childhood cancer is complex and extends beyond values and preferences. Underpinning factors and values are consistent through the decision-making process with influencing factors and preferences varying between parents. Preferences can conflict when parents want to continue cancer-directed therapy whilst maintaining their child’s quality of life or can change depending on a parents’ cognitive state as they realise cure might be unlikely.

OBJECTIVE: Young people often report a protracted journey to diagnosis and frequently report perceived delays. This study was undertaken to increase understanding of the self-reported prediagnosis experiences in young people with a non-haematological cancer, as close as possible to the time of diagnosis. METHODS: Narrative interviews were conducted with 24 young people aged 16-24, 2-4 months from the diagnosis of a solid tumour. Data were analysed to identify whether prediagnosis narratives could be classified according to shared characteristics (typologies) to identify broader contextual issues concerning cancer, and cancer risk perceptions, in this age group. Case notes were also accessed to contextualize and confirm accounts. RESULTS: The main themes, which included a group narrative concerning perspectives of delay, included the impact on an individual's everyday life by symptoms; the role that significant others in young peoples' lives played in the interpretation of symptom significance; the negotiation of entry into, and experiences of, generalist health care; entry into specialist care; and the threshold points that exemplified when events shifted and a diagnosis was eventually obtained. CONCLUSIONS: The narratives reveal complex, and multidimensional explanations for delay with individual and contextual factors contributing. Insights were gained into preventable diagnostic delay; including investigations having been instigated, but not followed up. Each narrative also offered significant insights into how cancer symptoms should be considered within the context of young peoples' lives. This would help prevent signs and symptoms in this age group failing to trigger suspicion and not being treated seriously.

Ways of helping children with cancer to take part in decisions about their health care Cancer is a serious illness that involves complex treatments with unpleasant side effects. Children with cancer generally prefer to be involved in some way in decisions about their care and treatment. Involving children in decisions about their health care can help their understanding of the disease and treatment, reduce their fears, help them feel more prepared and help them cope better with their cancer. The review of trials did not find any studies that helped children to participate in decision-making with parents and healthcare staff. More research is needed.

BACKGROUND: Whilst there is evidence in the literature to support the continuation of a children's nursing qualification, the distinction between generalist and specialist nursing is insufficiently comprehensive to distinguish children's nursing from other branches of nursing. AIM: To develop a definition of children's nursing and specialist children's nursing in terms of competencies as the basis for differentiating them from other forms of nursing. DESIGN: A multi-method comparative design incorporating a case study approach was used. This included a nominal group technique, focus groups, Delphi survey and semi-structured interviews. Two arms of data collection were undertaken concurrently (during 1998-2000) with children's nurses (n = 146) and specialist children's nurses (children's cancer nurses, n = 37) from a number of centres in the United Kingdom (UK). FINDINGS: The holistic competencies developed from the data exposed characteristics of knowledge, skills, abilities, values and qualities displayed in the context of professional work for both groups of nurses. A classification of competencies was developed inductively from the data by two independent researchers through the labelling, defining and ordering of competencies. The resulting hierarchy of competencies and sub-competencies illustrates relationships between children's nurses and specialist children's nurses and provides a detailed definition of children's nursing and specialist children's nursing. CONCLUSION: There is a significant common element in these two areas of nursing practice, and generalist preparation in children's nursing is the foundation of specialist children's nursing practice. Generalist knowledge and skills are expanded in specialist practice and there is also evidence of specialist practice that is beyond the scope of general nursing practice.

This paper reports on the use of focus groups to investigate the development of clinical nurse specialist roles. The need for this project was identified during initial research, undertaken in two London Hospital Trusts, to assess the variety and nature of advanced clinical nursing roles already in evidence. From analysis of these data, this second stage of the research developed, in which the future of the clinical nurse specialist role within these two trust settings was explored. The initial steps of grounded theory, analytical techniques and procedures, using a constant comparative method, were used to analyse the findings from five focus groups (composed of a total of 25 nurses from two trusts). From the data, six categories were identified; role components; experience versus education; supportive strategies; personal qualities; future role development and development strategies. These categories provide the framework for discussing the findings of the research, within the context of the available literature. This examination of the clinical nurse specialist role highlights issues for career progression and education strategies. Both will need careful planning, in order for the clinical nurse specialist role to be considered and evolve as part of a potential strategy for the development of nursing roles within the two trusts and on a national level.

Objectives: BRIGHTLIGHT is a national evaluation of cancer services for teenagers and young adults in England. Following challenges with recruitment, our aim was to understand more fully healthcare professionals’ perspectives of the challenges of recruiting young people to a low-risk observational study, and to provide guidance for future recruitment processes. Design: Qualitative. Setting: National Health Service (NHS) hospitals in England. Methods: Semistructured telephone interviews with a convenience sample of 23 healthcare professionals. Participants included principal investigators/other staff recruiting into the BRIGHTLIGHT study. Data were analysed using framework analysis. Results: The emergent themes were linked to levels of research organisational management, described using the levels of social network analysis: micro-level (the individual; in this case the target population to be recruited—young people with cancer); meso-level (the organisation; refers to place of recruitment and people responsible for recruitment); and macro-level (the large-scale or global structure; refers to the wider research function of the NHS and associated policies). Study-related issues occurred across all three levels, which were influenced by the context of the study. At the meso-level, professionals’ perceptions of young people and communication between professionals generated age/cancer type silos, resulting in recruitment of either children or adults, but not both by the same team, and only in the cancer type the recruiting professional was aligned to. At the macro-level the main barrier was discordant configuration of a research service with a clinical service. Conclusions: This study has identified significant barriers to recruitment mainly at the meso-level and macro-level, which are more challenging for research teams to influence. We suggest that interconnected whole-system changes are required to facilitate the success of interventions designed to improve recruitment. Interventions targeted at study design/management and the micro-level only may be less successful. We offer solutions to be considered by those involved at all levels of research for this population.

This study aimed to explore the acceptability of a novel device (‘MyShield’): a device used for distraction during clinical procedures. It is a cardboard cuff, designed to fit around the arm, either above the elbow or around the wrist and used to hide the procedure from view. This device was tested in practice, to establish acceptability to children, parents and clinical staff. Fifty-eight children tried ‘MyShield’ during a venepuncture procedure. Feedback from 54 children, 58 parents/carers and 16 clinical staff was collected using surveys and interviews. In 24 cases, observational data were also collected. A large majority of children (94%, n = 51) and parents (96%, n = 56) reported a positive experience when using ‘MyShield’; saying they would likely use it again. Potential of ‘MyShield’ in promoting parent/clinician interaction with the child was highlighted. Data suggests that ‘MyShield’ may be a useful device for children undergoing venepuncture, when used in conjunction with standard care, and subject to individual preferences and choice. Further work is required to establish mechanism of action and whether use of ‘MyShield’ has any impact across a range of short- and long-term outcome measures relating to patient experience and effectiveness.

It is an honour to be the first children's nurse to be asked to deliver the Robert Tiffany Lecture. However, the invite also provoked some anxiety: the responsibility weighs heavy. An opportunity to both celebrate the success of the speciality and explore the challenges that still face children's cancer nurses could not be missed. Two themes provide the focus for this paper, that of growth and evidence in action. Firstly, I will spend some time reflecting on how far we have come, describing stages of growth, development, maturation and differentiation in children's cancer nursing that defines nurses, and the speciality, as both similar and different to other nurses and other specialities. Secondly, I want to explore the notion of evidence and action and share some of the challenges we face in developing research for practice. The challenges themselves are of interest to all cancer nurses, as the solutions described have the potential for translation to other areas within cancer care. Children's cancer nursing is a relatively new speciality, and in terms of research in nursing this has only become integrated into our work in more recent years. Like many areas in nursing we continue to evolve, by anticipating and responding to changes in cancer treatments and thus influence healthcare delivery. This paper represents a point in time in the United Kingdom. Children's cancer nursing has unique qualities that attract nurses to work in the speciality, the essence of which is knowing about children and young people.

The concurrent use of an oral assessment guide and oral care algorithm proved valuable in providing a more consistent approach to the oral care of children on a particular paediatric oncology ward (Gibson et al. 1997). However, as action research was chosen to develop practice, the diagnosis of new problems was anticipated. The identification of problem areas arose from two sources-informal feedback from the practice setting and via a formal audit using a tripartite approach consisting of a structured interview, vignettes and an analysis of existing documentation. The findings firstly demonstrated that practitioners experienced problems associated with the interpretation of the information contained within the existing algorithm. Secondly, there was also strong evidence to show that the production of a second 'therapeutic' algorithm would be beneficial to patient care. Finally, to ensure clarity, minor changes were required to the oral assessment guide. By using a collaborative approach between researchers and practitioners a positive resolution to a commonly identified clinical problem was expedited.

Adolescents and young adults have unique needs which differ from those of children or adults. In the United Kingdom, we have dedicated services, which are diverse in how they are managed and delivered. A multiple-case study was conducted in young people’s cancer services in four geographical regions of England. Data collection included: semi-structured interviews with healthcare professionals (n=41) and young people (n=29); and observation (total=120 hours). Thematic analysis was used to synthesize and interpret five emerging themes describing the way a culture of adolescent and young adult-specific care developed. To develop a cultural attitude which embraced and promoted core values, leadership was needed, as well as high patient volume accessing a service. Time was essential, an adolescent and young adult-centered culture of care does not happen overnight, it needs time and dedicated staff to evolve, but once in place, services have a significant impact on the experience of care.

Background Both under- and overnutrition may have adverse impact on outcome of cancer in children and teenagers/young adults (CTYA). Previous studies confirm that screening for nutritional risk and detection of nutritional abnormality is inconsistently undertaken in practice. Methods We undertook a survey of dietetic resource and nutritional assessment in CTYA principal treatment centres (PTC) in the United Kingdom. Responses were received from 95% children's and 69% TYA PTC. Results Only 13/18 (72%) children's PTC, and one of 11 (9%) TYA PTC, met national standards for dietetic resource; one of 18 (6%) paediatric and six of 11(54%) TYA PTC had no such resource. While resources were greater in larger paediatric PTC, who were also most likely to undertake stem cell transplantation, resources in TYA PTC were too low to assess relationship to centre size. Most centres focused resources on inpatient care and

AIM: to explore retrospectively the decisions made by parents regarding their choice of place of care at time of death for their child with advanced cancer. DESIGN: cross-sectional descriptive study. ANALYSIS: interpretive phenomenological analysis. SAMPLE: parents of five children who had died of advanced cancer, whose care was overseen by the participating paediatric oncology centre in the southeast of England. Three children died at home and two in hospital. RESULTS: seven themes were identified, four of which will be discussed: valuing time left; needing to feel safe and secure; we didn't know what to expect; and the difference between specialist and non-specialist staff. Families' decisions were instinctive or intuitive rather than a calculated weighing up of options. Families identified aspects of care that were both valuable and could be improved. CONCLUSION: parents value the time that their children have to live when they know that their child's disease is incurable. Decisions around place of care are just that, decisions around place of care not place of death. Families valued the same types of support from staff regardless of the setting in which care was provided and found the same deficiencies difficult.

Purpose Objective was to determine whether physical activity reduces the severity of fatigue in patients with cancer or hematopoietic stem cell transplant (HSCT) recipients. Methods We conducted a meta-analysis of randomized trials comparing physical activity with control interventions for the management of fatigue in patients with cancer or HSCT recipients. Results There were 170 trials included. Physical activity reduced the severity of fatigue when compared to all control groups (standardized mean difference −0.49, 95% confidence interval −0.60 to −0.37; P 

Background: BRIGHTLIGHT is a national evaluation of cancer services for young people aged 13-24 years in England. It is a mixed methods study with six interlinked studies aiming to answer the question: do specialist cancer services for teenagers and young adults add value? http://www.brightlightstudy.com/. Young people have been integral to study development and management, working as co-researchers, consultants and collaborators throughout. We aimed to share results in a way that was meaningful to young people, the public, and multidisciplinary professionals. This paper reports the development of ‘There is a Light: BRIGHTLIGHT’, a theatrical interpretation of study results by young people, and offers insight into the impact on the cast, researchers and audiences. Methods: The BRIGHTLIGHT team collaborated with Contact Young Company, a youth theatre group in Manchester. Twenty members of Contact Young Company and four young people with cancer worked together over an eight-week period during which BRIGHTLIGHT results were shared along with explanations of cancer, healthcare policy and models of care in interactive workshops. Through their interpretation, the cast developed the script for the performance. The impact of the process and performance on the cast was evaluated through video diaries. The research team completed reflective diaries and audiences completed a survey. Results: ‘There is a Light’ contained five acts and lasted just over an hour. It played 11 performances in six cities in the United Kingdom, to approximately 1,377 people. After nine performances, a 30-minute talk-back between members of the cast, creative team, an expert healthcare professional, and the audience was conducted, which was attended by at least half the audience. Analysis of cast diaries identified six themes: initial anxieties; personal development; connections; cancer in young people; personal impact; interacting with professionals. The cast developed strong trusting relationships with the team. Professionals stated they felt part of the process rather than sitting on the periphery sharing results. Both professional and lay audiences described the performance as meaningful and understandable. Feedback was particularly positive from those who had experienced cancer themselves. Conclusions: Using theatre to present research enabled BRIGHTLIGHT results to be accessible to a larger, more diverse audience.

Following a Delphi survey undertaken with nurses on a specialist children's unit to identify priorities for nursing research, this paper outlines the results of a survey to ascertain the views of doctors and parents regarding the results of the Delphi. This approach was in keeping with national guidance on multi-professional working in paediatric oncology and the importance of service-user involvement in planning and evaluating care. Convenience samples of doctors (n=16) and parents (n=10) were asked to rank the priorities previously identified by nurses. Results highlighted that in the main, nurses, doctors and parents agreed on the key areas that should take priority for research. Nurse's knowledge of day-to-day symptom management, children's quality of life, negotiation and communication in relation to care provision were identified by all three groups as high priorities. There were some areas where the views varied: this was generally in relation to the different primary focus of the individual groups-parents being very concerned with the effect of daily ward routines and procedures and their child's overall hospital experience, nurses with issues such as staff retention and morale, whereas doctors were more concerned with issues around information giving and consent to treatment. Limitations of the study, including sample selection and the transient nature of the population involved are discussed within the paper. The paper concludes that all three groups shared similar views, being focused on issues directly related to patient care. Consensus between the groups should result in future research initiatives reflecting a shared focus and responding to an identified need.

Background: The transition from child to adult services is a crucial time in the health of young people who may potentially fall into a poorly managed 'care gap'. Health service provision, which fails to meet the needs of young people and families at this time of significant change, may result in deterioration in health or disengagement with services, which can have negative long-term consequences. Developing transitional care packages has become a focus of activity in the United Kingdom and elsewhere. Indeed policy documents have been trying to guide practice for many years, with some variable success. There is much work still to be done, particularly around how guidance and the sharing of best practice, when combined can result in a change practice. Objective: This study aimed to explore the views of professionals involved in transitional care, the process of transition in their services, the barriers and facilitators to transition. Methods: This was a qualitative study using focus group methodology. Four focus groups were carried out, attended by 36 health professionals across child and adult services. They had expertise in working with young people with various health conditions and disabilities. Transcripts were analysed using qualitative content analysis. Results: Eight key factors that impact on transition emerged from the data. These included factors associated with the patient group (such as age, health condition, having complex needs) as well as factors associated with services (such as the availability of equivalent services within adult care and the links between child and adult team). Conclusion: It is imperative that health professionals consider the population they are working with when planning transitional care and take into account the factors which can lead to delayed transition so that this can be avoided if possible. Numerous examples of initiatives to facilitate more timely transition were shared: these have been reflected in our ‘Benchmarks for Transition from Child to Adult Health Services’. We offer these benchmarks to inform and guide the practice of others, and illustrate their potential for use in the context of the findings shared here.

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.

In this paper, we examine the use of creative methods for understanding the experience of young adults aged between 16 and 30 years over a year following a cancer diagnosis. Exploring the renegotiation of identity, the narrative, longitudinal research design of the study demonstrated the unfolding process of the narrative work between participants and researcher. We used a combination of visual, spoken and reflexive psychosocial approaches to understand emergent narratives, many of which do not always find symbolisation in language. Our methodological approach focused on the difficult and sometimes ‘unspeakable’ nature of the young adults’ narratives, demonstrating the importance of different modes of communication in articulating complicated relations with uncertain futures. In this respect the links between narrative, social action and the imagining of possible futures are precarious. In this paper, we explore how untellable issues were explored, and the challenges of doing so.