Mental Health Admissions to Paediatric Wards Study (MAPS): a protocol for the analysis of Hospital Episode Statistics (HES) data.

INTRODUCTION: 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. METHODS AND ANALYSIS: 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. ETHICS AND DISSEMINATION: 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.

Nutritional assessment and dietetic resource for children and young people with cancer in the United Kingdom.

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 <50% considered staffing adequate; 82% used nutritional screening tools but without consistency in the tool used. Weight and height were the principal method for assessment, but with inconsistency in the frequency of measurement and use in different clinical settings. Measures derived from weight and height, including body mass index (BMI), were inconsistently utilised. The use of arm anthropometry was rare despite evidence that use increases recognition of undernutrition. Detailed nutritional assessment was infrequently attempted. CONCLUSION: Barriers to adequate nutritional assessment and treatment for all patients include resource limitations (particularly TYA), training for staff, and uncertainty about detailed assessment of nutritional status. There is a need to harmonise screening and assessment of nutritional status in CTYA with cancer.

The BRIGHTLIGHT National Survey of the Impact of Specialist Teenage and Young Adult Cancer Care on Caregivers' Information and Support Needs.

BACKGROUND: Teenage and young adult cancer services in England are centralized in 13 principal treatment centers (TYA-PTC). These "specialist services" are designed to support caregivers as well as young people. OBJECTIVES: 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 6 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 components analysis reduced the questionnaire to 5 dimensions, which were used as dependent variables in subsequent regression analysis. RESULTS: Four hundred seventy-six responses 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 to optimize opportunities for caregivers to be involved in decision making.

Psychometric evaluation of the traditional Chinese version of the resilience Scale-14 and assessment of resilience in Hong Kong adolescents.

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. TRIAL REGISTRATION: Clinicaltrials.gov ID NCT03538145 (retrospectively registered on May 15, 2018).

Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study.

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 strategies (Glasper, Comp Child Adolesc Nurs 40:63-67, 2017). 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. Health Research Authority 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 LD that meets their needs. There is a pressing need to understand the impact this has on them and their families. TRIAL REGISTRATION: The study has been registered on the NIHR CRN portfolio 20461 (Phase 1), 31336 (Phases 2-4).

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

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

Cancer-Related Pain and Pain Management: Sources, Prevalence, and the Experiences of Children and Parents.

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.

The art of age-appropriate care: reflecting on a conceptual model of the cancer experience for teenagers and young adults.

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.

Parental assessment of adolescent quality of life: can it replace self-assessment?

PURPOSE: (a) To compare the agreement between adolescent assessments of their quality of life (QoL) and that of their mothers; (b) to explore how the comparison is influenced by the method of analysis. METHODS: Forty-nine adolescents aged 12-18 years who received liver transplants, and their mothers completed the Child Health Questionnaire self (CF87) and parent (PF50) report. RESULTS: There was wide variation in agreement between adolescent and parent responses depending on the method of analysis used. Analysis with t test showed no differences in physical function (t = 1.42, P = 0.16), role/social-physical (t = 0.07, P = 0.94), mental health (t = 0.55, P = 0.59) and family activities (t = -0.40, P = 0.69). Using Pearson correlation coefficients, there were significant correlations in every domain; however, there were no intraclass correlation or concordance correlation coefficients ≥0.80 suggesting less than strong agreement. Finally, the Bland-Altman comparison indicated wide variation in the 95% limits of agreement ranging from -46 to 58.5. CONCLUSIONS: There was considerable inconsistency in agreement according to the methods of analysis. The wide variation in scores between adolescent and parent assessment of QoL suggests self rather than proxy report should be used as the primary outcome where possible.

Assessment and management of nutritional challenges in children's cancer care: a survey of current practice in the United Kingdom.

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 Children 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.

A systematic review of oral assessment instruments: what can we recommend to practitioners in children's and young people's cancer care?

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.

Contemporary issues relating to assessment of pre-registration nursing students in practice.

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.

What are the experiences of the child with a brain tumour and their parents?

Brain tumours are one of the most common forms of childhood cancer, affecting approximately 350 children in the UK each year (CancerBackup, 2005). The complex and long treatment for such tumours is often delivered in more than one place of care, as a result children and their families meet a large number of healthcare professionals from a variety of disciplines. The study described in this paper was undertaken to explore the experiences of children/young people (C/YP) with a brain tumour (and their families) being treated at a NHS Trust. A longitudinal, exploratory and descriptive case study was undertaken, using multiple methods of data collection. Three age appropriate data collection techniques were used with children; a modified Mosaic Approach (Clark and Moss, 2001) for children 4-6 years; the 'draw and write technique' with children aged 6-12 year olds, children over 12 years old were interviewed. Semi-structured interviews were also undertaken with parents. Ten children aged 4-13 years, nine mothers and nine fathers took part in the study. Data were analysed using the process described by Ritchie and Spencer (1994). Four themes are identified, receiving and seeking information, finding your way through, how life is affected, who and what help? The process of receiving and seeking information was a challenge for both parents and children. Age appropriate environment and activities helped with adjustment and boredom during long waits and treatment. The need for support from one individual to help families find their way through the complexity of healthcare was a persistent theme. Insights into what children and their parents value from the services offered and areas that they as users find challenging were identified from this study and the findings have implications for future practice and service provision.

Designing an oral mucositis assessment instrument for use in children: generating items using a nominal group technique.

GOALS OF WORK: 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. MATERIALS AND METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Challenges of mucositis assessment in children: expert opinion.

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.

Determining the political influence of nurses who work in the field of hepatitis C: a Delphi survey.

AIM: The principle aim of this study was to determine the political influence and the professional profile of nurses who work in the field of hepatitis C. BACKGROUND: Hepatitis C has emerged as a major public health problem. Its growing impact on health services has led to the development and expansion of a range of specialist nursing roles in hepatitis C. The professional group has never been profiled in the current political and social context, although many nurses traverse patient, organizational and strategic levels of practice and service development. DESIGN: A multi-centre survey design using the Delphi technique was undertaken to gain consensus. A total of 160 nurses who work in the field of hepatitis C, were invited to participate. The target population was located from 90 sites across the United Kingdom. Data collection comprised two questionnaire rounds. Final sample included 40 participants in round 1 and 34 in round 2. FINDINGS: The results showed strong consensus on the necessity of structural and policy changes at national and regional levels and nurses' inclusion within that process. Of note was the need for policy group representation and engagement in the commissioning agenda. Overall, the findings demonstrate that most nurses have advanced contextual understanding of the issues. There is evidence of political activities and nursing influence at local and regional levels. This is less evident at national level, where there is only a core of active members. CONCLUSION: These findings reveal nurses to be operating and thinking strategically without referencing their activities as political. Nurses should be more focused in translating strategic thinking into political activities. This should be coordinated and supported through the Hepatitis Nurse Specialist Forum to ensure nurses become increasingly visible in driving services forward at policy level. RELEVANCE TO PRACTICE: Successive governments have failed to address the serious structural problems in resource allocation, lack of public awareness and policy direction. This is where patient, organizational and strategy levels interface in hepatitis C because policy affects patients and organizations, patient level care affects policy direction and nurses can influence all three.

Technology into practice: young people's, parents' and nurses' perceptions of WISECARE+.

UNLABELLED: Technology is a central aspect of young people's lives, with the internet and mobile phone technology providing the preferred means of communication. This pilot explored perceptions and experiences of young people, parents and healthcare professionals on the role of technology in monitoring and managing chemotherapy-related toxicity. AIM: To introduce the WISECARE+ process for recording and communicating symptoms following chemotherapy to a teenage patient population and evaluate its usefulness with patients, parents and nursing staff. METHOD: A convenience sample of 11 young people (aged 13 to 20 years) with a haematological or solid tumour undergoing primary treatment, were recruited from two UK regional paediatric oncology centres. The young people completed a daily symptom questionnaire for 14 consecutive days following a course of chemotherapy. They evaluated the presence or absence of symptoms of nausea, vomiting, fatigue and oral problems, their severity and how much the symptom bothered them. Perception questionnaires were completed by the 11 young people, four parents and eight nurses at the end of the 14 days. RESULTS: Young people and parents found the symptom questionnaire simple to understand, easy to complete and they liked the paper format. The nurses' confidence with IT varied but all felt that it could be useful in their clinical practice. CONCLUSION: These young people appeared to gain from their participation in the project, especially in relation to completing the questionnaire as they were able to see a change in symptoms over time that was encouraging, particularly in situations where the young person had been quite ill. This work is continuing with formats such as a handheld computer or mobile phone being considered to collect symptom information. Additional factors such as reading levels and dyslexia are also being considered.

Establishing content validity of the oral assessment guide in children and young people.

There is a need for accurate and consistent oral assessment to measure mucosal changes and oral complications associated with cancer therapies. Mucositis is an important and common side effect of cancer therapies that merits the identification of improved health-care interventions. Developing appropriate and reliable oral assessment instruments for use with children is relevant to the evaluation of these interventions. The purpose of this study was to determine the content validity of the oral assessment guide (OAG) in children: an instrument that was designed to objectively assess the physiological changes of the oral cavity following administration of chemotherapy and radiotherapy to adults. This process is considered to be most effective when undertaken systematically. A judgement quantification process was used with health care professionals in paediatric oncology to establish content validity of items (n=9) and instrument (n=10). A revised OAG more pertinent to children and young people was produced in the light of this process.