Recent Submissions

  • Paediatric family activated rapid response interventions; qualitative systematic review

    Cresham Fox, Shannon; Taylor, Nicola; Marufu, Takawira C; Hendron, Elizabeth; Manning, Joseph C (Elsevier, 2022)
    Background Failure to recognise deterioration early which results in patient death, is considered failure to rescue and it is identified as one of the leading causes of harm to patients. It is recognised that patients and their families can often recognise changes within the child’s condition before healthcare professionals. To mitigate the risk of failure to rescue and promote early intervention, family-activated rapid response systems are becoming widely acknowledged and accepted as part of family integrated care. Objective To identify current family-activated rapid response interventions in hospitalised paediatric patients and understand mechanisms by which family activation works. Methods A narrative systematic review of published studies was conducted. Seven online databases; AMED, CINHAL, EMBASE, EMCARE, HMIC, JBI, and Medline were searched for potentially relevant papers. The critical appraisal skills programme tool was used to assess methodological rigor and validity of included studies. Results Six studies met the predefined inclusion criteria. Five telephone family activation interventions were identified; Call for Help, medical emergency-teams, Condition HELP, rapid response teams, and family initiated rapid response. Principles underpinning all interventions were founded on a principal of granting families access to a process to escalate concerns to hospital emergency teams. Identified interventions outcomes and mechanisms include; patient safety, empowerment of families, partnership working/ family centred care, effective communication and better patient outcomes. Interventions lacked multi-lingual options. Conclusion Family activation rapid response system are fundamental to family integrated care and enhancing patient safety. Underlying principles and concepts in delivering interventions are transferable across global healthcare system.
  • Perspectives on autonomy and advance decision-making: A qualitative study based on older people living with frailty and their carers

    Bramley, Louise (Sage, 2020)
    The Mental Capacity Act 2005, covering England and Wales, sets out formal tools to extend autonomy past the onset of incapacity that protect an individual's right to retain autonomy in decision-making. Despite policy drivers who encourage healthcare professionals to support advance decision-making for future care, very few individuals living with frailty engage in doing so. In this article, we interrogate these issues using data from a qualitative study of older people living with frailty, which engages with how those living and coping with varying degrees of frailty experience their situation day to day and their perceptions of planning for incapacity and decision-making. After critically evaluating the viewpoints of older people living with frailty and their carers, we assess the significance of their perceptions for the contemporary debates surrounding autonomy and how they align with the policy perspectives and the clinical practice of advance care planning.Copyright © The Author(s) 2020.
  • Using patient and public involvement to identify priorities for research in long-term conditions management

    Brand, Sarah; Bramley, Louise; Dring, Eleanore; Musgrove, Alison (Mark Allen Publishing, 2020)
    BACKGROUND: Patient and public involvement (PPI) is increasingly important in healthcare research. Although this is accepted at the level of individual research studies, it has been less well used in scoping fundamental research priorities. It has been suggested that patients with long-term conditions (LTCs) are well placed to influence research priorities in this area due to their accumulated experience of illness over time. AIMS: To obtain PPI in research-priority setting for a group with a special interest in LTC research. DISCUSSION: PPI representatives provided views on issues they thought required further research. The facilitators were able to move from the specifics of these ideas to identify cross-cutting research priorities. CONCLUSION(S): It was possible to determine broad research themes despite PPI representatives initially articulating identified issues in very specific terms. Facilitating a better understanding of the research process for PPI representatives would allow their contribution to be more effective. Implications for practice PPI should be considered at the beginning of the process when broad research priorities are considered and before the study design. This is particularly so for broad, non-specialty-focused research themes such as LTCs. More work is required to ensure the views of harder-to-reach groups are included in this type of PPI.
  • Concerns, coping and the electronic holistic needs assessment: experiences of UK breast cancer survivors

    Briggs, Lydia; Cooper, Joanne (Sage, 2020)
    BACKGROUND: Physical and psychological concerns associated with a breast cancer diagnosis continue long after treatment. Macmillan Cancer Support developed an electronic Holistic Needs Assessment (eHNA) to help identify these concerns and allow a healthcare professional to address these as part of The Recovery Package., AIMS: The study aim was to understand the women's experiences of having breast cancer, and of completing Macmillan's eHNA as part of their care., METHODS: A qualitative approach was adopted. Semi-structured interviews were undertaken with 15 women, 12-18 months following surgical treatment for invasive breast cancer. Thematic analysis identified key themes., RESULTS: Four main themes were identified in relation to experiences of the eHNA, experiences of breast cancer, coping with breast cancer and the psychological effects of surviving. Perceptions towards the eHNA varied; some women viewed the eHNA as a research tool for hospital use rather than a beneficial aspect of their care. Several participants felt unable to raise their psychological concerns on the eHNA., CONCLUSIONS: Although experiences differ, psychological issues remain a key factor for women with breast cancer, lasting long after treatment. The eHNA is not currently used to its potential or recognised by women as a tool to support their care. Further research is needed into how the eHNA can be used effectively to capture psychological concerns and determine best approaches to implementation of the tool to support individualised care. Copyright © The Author(s) 2019.
  • Women's information needs, decision-making and experiences of membrane sweeping to promote spontaneous labour

    Evans, Kerry (Elsevier Ltd, 2020)
    OBJECTIVE: To explore and synthesise evidence of women's information needs, decision-making and experiences of membrane sweeping to promote spontaneous labour. DESIGN: A systematic review following the Joanna Briggs Institute (JBI) meta-aggregative approach to qualitative evidence synthesis. Relevant databases were searched for literature published in English between 2000-19. Study quality was assessed using the JBI quality assessment tool for qualitative studies. SETTING: Qualitative research conducted in OECD countries describing women's information needs, decision-making and/or experiences of membrane sweeping to promote spontaneous labour. FINDINGS: One article met the criteria for inclusion. This article describes the experience of a membrane sweep given without consent. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: There is a lack of evidence around women's information needs, decision-making and experiences of membrane sweeping. This is concerning, especially in the context of rising rates of formal induction of labour. Further research is needed to investigate how women are being offered membrane sweeping and what information women need to make informed choices about membrane sweeping to promote spontaneous labour.Copyright © 2019. Published by Elsevier Ltd.
  • How do people in prison feel about opt-out hepatitis C virus testing?

    Jack, Kathryn; Thomson, Brian J; Irving, William L (John Wiley and Sons Ltd, 2020)
    The prison population is central to the campaign to eliminate hepatitis C virus as a public health threat. In the UK, this has led to the introduction of a national 'opt-out' policy, requiring people in prison to be tested for HCV unless they decline, with a target to test 75% of those admitted. However, in a representative prison estate in the East Midlands of England (20,000 prison entrants per annum) testing rates were only 13.4%. This qualitative study explains why the rates of test uptake are so far short of target. This qualitative study examines the experiences of 45 people in prison about hepatitis C virus testing in an English category C (low security) prison. The data collection method was semi-structured interviews. The data were coded and analysed according to the research questions, and interpretation of the data was aided by the use of a thematic network approach. The themes Fear, Insufficient Knowledge, Stigma, Privacy, Choice and Prison Life emerged as the principal barriers to test uptake. Test Uptake Facilitators that promoted testing were identified by participants and benefits presented of prison health care being a Health Farm. In order to increase hepatitis C virus test uptake, significant changes and flexibility in the timing, location, and staff deployed to test are required. Providing information to people in prison about hepatitis C virus transmission and treatment may reduce fears and enable the test uptake target to be met and sustained. Copyright © 2020 John Wiley & Sons Ltd.
  • Using dried blood spot testing for diagnosing viral hepatitis

    Jack, Kathryn; Irving, William L (Mark Allen Publishing, 2020)
    The target set by the World Health Organization to eliminate viral hepatitis as a public health problem by 2030 first requires methods of testing for hepatitis B and C virus that are acceptable to diverse populations. One such test is the dried blood spot sample method. This article explains what a dried blood spot sample is, how it is collected, and how it can help increase the viral hepatitis test uptake in prisons, drug and alcohol services, and other populations at risk of hepatitis B or C infection.
  • Research round-up

    Jack, Kathryn (Mark Allen Publishing, 2019)
    Abstract: Kathryn Jack, PhD research fellow at the University of Nottingham and specialist nurse at Nottingham University Hospitals NHS Trust, provides a overview of recently published, liver-related nursing and health articles
  • Hepatitis C virus infection risk factors and test uptake in an English prison

    Jack, Kathryn (Mark Allen Publishing, 2020)
    Background: People in prison are a key demographic in the drive to eliminate hepatitis C virus (HCV). There is insufficient knowledge about risk factors for HCV among the prison population, which may partially explain low test uptake. Aim(s): This study aimed to understand the HCV risk factors present and HCV test uptake in an English prison. Method(s): Men in prison were surveyed. The questions included whether they had been tested in current sentence, reasons for not being tested and risk factors for HCV. Finding(s): Of 109 respondents, 71% had not been tested in their current prison, 45% had not tested in their current sentence and 35% reported ever injecting drugs. Additional risk factors for hepatitis C included: sharing prison hair clippers (76%) and fighting in prison (44%). Conclusion(s): Not all people in prison with risk factors for HCV were tested. The role of intra-prison risks, such as fighting and sharing hair clippers, requires furtherexploration. Copyright © 2020 MA Healthcare Ltd. All rights reserved.
  • The implications of COVID-19 for gastroenterology and hepatology: A state-of-the-art review

    Jack, Kathryn (Mark Allen Publishing, 2020)
    COVID-19 has erupted as a global public health emergency, and data are emerging on the wider impacts of this viral respiratory infection. This state-of-the-art review includes ten publications from China about the impact of COVID-19 on gastrointestinal symptoms and liver disease. In addition to respiratory symptoms, some patients both present with and subsequently develop gastrointestinal symptoms, such as nausea or diarrhoea. COVID-19 can also be found in faeces, sometimes lasting for several days following a negative oropharyngeal test result. Abnormal serum liver function tests have been recorded, but these may be due to a deterioration of previously known chronic liver disease, ischaemia or hypoxia due to critical illness, or a drug-induced hepatotoxicity. Many existing care pathways for people with chronic gastrointestinal or liver disease have been abruptly halted in order to redirect staff and facilities to people acutely ill with COVID-19 and this may lead to an increase in morbidity and mortality in these cohorts. Copyright © 2020 MA Healthcare Ltd. All rights reserved.
  • Paediatric intensive care follow-up provision in the United Kingdom and Republic of Ireland

    Manning, Joseph C; Popejoy, Emma; Dodds, Elizabeth (John Wiley and Sons Ltd, 2021)
    The objective of this study was to examine the characteristic, content, and role of Paediatric Intensive Care Units (PICUs) in the provision of follow-up for children and their families' post-intensive care discharge in the United Kingdom (UK) and Republic of Ireland (RoI). The study followed a descriptive self-reported, web-based survey design. "In-hospital PICU follow-up" was defined as follow-up delivered by the PICU team following PICU discharge but before hospital discharge and "post-discharge PICU follow-up" was defined as follow-up delivered by the PICU team following hospital discharge. The survey was administered to all 28 PICUs in the UK and RoI. Paediatric intensive care medical directors or delegated individuals participated. Data were collected between September 2017 and January 2018 with a response rate of 79% (n = 22/28). Twelve units provided either in-hospital and/or post-discharge PICU follow-up. Ten (45%) PICUs reported providing in-hospital follow-up, with half (n = 5) using an eligibility criteria for in-hospital follow-up, which related to disease groups. The most frequently reported form of in-hospital PICU follow-up consisted of face-to-face patient consultation (n = 8) by a PICU doctor (n = 5) and/or nurse (n = 4). The time at which initial contact was made was usually not predetermined (n = 4) and the assessment of care needs included are tracheostomy care (n = 4), respiratory care (n = 4), and sedative medication weaning plan (n = 5). Four PICUs reported to provide post-discharge follow-up. This involved telephone (n = 2), follow-up clinic consultations (n = 1) or home visits (n = 1), provided predominantly by PICU doctors (n = 2), with their activity directed by patient needs (n = 3). Despite increasing evidence to suggest PICU survivors and their families experience negative sequalae post-PICU discharge, less than half of PICUs surveyed provide in-hospital follow-up and only a minority provide post-discharge follow-up. There is variation in the delivery, content, and format of in-hospital and post-discharge PICU follow-up in the UK and RoI. Copyright © 2020 British Association of Critical Care Nurses.
  • Quality of patient-reported outcomes used for quality of life, physical function, and functional capacity in trials of childhood fractures

    Manning, Joseph C (Bone and Joint Publishing, 2020)
    AIMS: This study evaluates the quality of patient-reported outcome measures (PROMs) reported in childhood fracture trials and recommends outcome measures to assess and report physical function, functional capacity, and quality of life using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) standards., METHODS: A Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA)-compliant systematic review of OVID Medline, Embase, and Cochrane CENTRAL was performed to identify all PROMs reported in trials. A search of OVID Medline, Embase, and PsycINFO was performed to identify all PROMs with validation studies in childhood fractures. Development studies were identified through hand-searching. Data extraction was undertaken by two reviewers. Study quality and risk of bias was evaluated by COSMIN guidelines and recorded on standardized checklists., RESULTS: Searches yielded 13,672 studies, which were screened to identify 124 trials and two validation studies. Review of the 124 trials identified 16 reported PROMs, of which two had validation studies. The development papers were retrieved for all PROMs. The quality of the original development studies was adequate for Patient-Reported Outcomes Measurement Information System (PROMIS) Mobility and Upper Extremity and doubtful for the EuroQol Five Dimension Youth questionnaire (EQ-5D-Y). All other PROMs were found to have inadequate development studies. No content validity studies were identified. Reviewer-rated content validity was acceptable for six PROMs: Activity Scale for Kids (ASK), Childhood Health Assessment Questionnaire, PROMIS Upper Extremity, PROMIS Mobility, EQ-5D-Y, and Pediatric Quality of Life Inventory (PedsQL4.0). The Modified Disabilities of the Arm, Shoulder, and Hand (DASH) questionnaire was shown to have indeterminate reliability and convergence validity in one study and PROMIS Upper Extremity had insufficient convergence validity in one study., CONCLUSION: There is insufficient evidence to recommend strongly the use of any single PROM to assess and report physical function or quality of life following childhood fractures. There is a need to conduct validation studies for PROMs. In the absence of these studies, we cautiously recommend the use of the PROMIS or ASK-P for physical function and the PedsQL4.0 or EQ-5D-Y for quality of life. Cite this article: Bone Joint J 2020;102-B(12):1599-1607.
  • An innovative approach to boosting patient and public involvement

    Brand, Sarah (EMAP Publishing Limited, 2019)
    Patient and public involvement is central to service improvement and research in healthcare. However, not all staff, patients and members of the public have the training, skills and confidence needed to get involved. Staff are not always persuaded of the benefits of such involvement, while patients and members of the public often lack knowledge of service improvement processes and the skills they require. Nottingham University Hospitals NHS Trust is keen to increase the use of patient and public involvement and looked for an innovative way of encouraging both staff and public and patient representatives to take it up. This resulted in an unusual style of conference where staff, public and patient delegates took part in 'speed-dating' sessions.
  • An exploration of predictors of children's nurses' attitudes, knowledge, confidence and clinical behavioural intentions towards children and young people who self-harm

    Manning, Joseph C (John Wiley and Sons Ltd, 2018)
    AIMS AND OBJECTIVES: To explore the potential predictors of children's nurses' attitudes, knowledge and confidence towards caring for children and young people admitted to hospital with self-harm., BACKGROUND: Admissions to paediatric inpatient settings for individuals who have self-harmed are growing. Limited previous research suggests that nurses have mixed attitudes towards people who have self-harmed and potentially lack the confidence to provide effective care. There is a specific paucity of research in this area for children's nurses., DESIGN: A cross-sectional descriptive survey was used to gather data for exploration of variables associated with attitudes, confidence, knowledge and clinical behavioural intentions of 98 registered children's nurses in a single tertiary children's hospital, colocated in a large acute NHS Trust in the UK., METHODS: Data were collected over a 4 weeks in 2015, using an online survey tool. The predictive effect of several demographic variables was tested on the outcomes of attitudes, knowledge, confidence and behavioural intentions, which were collected using relevant, previously used outcome measures., RESULTS: Increased experience was found to be associated with improved attitudes relating to negativity. Previous training in caring for children who had self-harmed was found to be associated with improved attitudes around perceived effectiveness of their care. Higher academic qualifications and having undertaken previous training on self-harm were each found to be associated with increased knowledge of self-harm, and increased age was associated with reduced knowledge of self-harm., CONCLUSIONS: This study provides an initial exploration of variables associated with attitudes, knowledge, confidence and behaviour intentions of registered children's nurses in relation to caring for CYP who have self-harmed., RELEVANCE TO CLINICAL PRACTICE: Targeted training on caring for CYP who have self-harmed should be considered as a component of continuing education for registered children's nurses in the UK to improve the experience and outcomes for this patient group. Copyright ©2018 The Authors Journal of Clinical Nursing Published by John Wiley & Sons Ltd.
  • Conflict resolution in anaesthesia: Systematic review

    Marufu, Takawira C (BMJ Publishing, 2018)
    Background: Conflict is a significant and recurrent problem in most modern healthcare systems. Given its ubiquity, effective techniques to manage or resolve conflict safely are required., Objective: This review focuses on conflict resolution interventions for improvement of patient safety through understanding and applying/teaching conflict resolution skills that critically depend on communication and improvement of staff members' ability to voice their concerns., Methods: We used the Population-Intervention-Comparator-Outcome model to outline our methodology. Relevant English language sources for both published and unpublished papers up to February 2018 were sourced across five electronic databases: the Cochrane Library, EMBASE, MEDLINE, SCOPUS and Web of Science., Results: After removal of duplicates, 1485 studies were screened. Six articles met the inclusion criteria with a total sample size of 286 healthcare worker participants. Three training programmes were identified among the included studies: (A) crisis resource management training; (B) the Team Strategies and Tools to Enhance Performance and Patient Safety (TeamSTEPPS) training; and (C) the two-challenge rule (a component of TeamSTEPPS), and two studies manipulating wider team behaviours. Outcomes reported included participant reaction and observer rating of conflict resolution, speaking up or advocacy-inquiry behaviours. Study results were inconsistent in showing benefits of interventions., Conclusion: The evidence for training to improve conflict resolution in the clinical environment is sparse. Novel methods that seek to influence wider team behaviours may complement traditional interventions directed at individuals. Copyright © Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.
  • A qualitative, exploratory study of nurses' decision-making when interrupted during medication administration within the paediatric intensive care unit

    Bower, Rachel A; Manning, Joseph C (Elsevier Ltd, 2018)
    OBJECTIVE: In the paediatric intensive care unit (PICU), medication administration is challenging. Empirical studies demonstrate that interruptions occur frequently and that nurses are fundamental in the delivery of medication. However, little is known about nurse's decision making when interrupted during medication administration. Therefore, the objective is to understand decision making when interrupted during medication administration within the PICU., RESEARCH DESIGN: A qualitative study incorporating non-participant observation and audio recorded semi-structured interviews. A convenience sample of ten PICU nurses were interviewed. Each interview schedule was informed by two hours of observation which involved a further 29 PICU nurses. Data was analysed using Framework Analysis., SETTING: A regional PICU located in a university teaching hospital in the United Kingdom., FINDINGS: Analysis resulted in four overarching themes: (1) Guiding the medication process, (2) Concentration, focus and awareness, (3) Influences on interruptions (4) Impact and recovery CONCLUSION: Medication administration within the PICU is an essential but complex activity. Interruptions can impact on focus and concentration which can contribute to patient harm. Decision making by PICU nurses is influenced by interruption awareness, fluctuating levels of concentration, and responding to critically ill patient and families' needs. Copyright © 2017 Elsevier Ltd. All rights reserved.
  • A call for advocacy and patient voice to eliminate hepatitis B virus infection

    Jack, Kathryn (Elsevier Ltd, 2022)
    Hepatitis B virus (HBV) infection is estimated to affect around 300 million individuals worldwide, but has been neglected by health-care provision, education, research, and policy. 1 , 2 In light of the WHO goal to eliminate viral hepatitis as a public health threat by 2030, there is an urgent need for enhanced advocacy for HBV. Organisations representing and led by individuals with tuberculosis, HIV, and hepatitis C virus (HCV) infection have set a precedent for the provision of infrastructure, education, peer support, fundraising, and advocacy, often with support from large international donors. Parallel examples of advocacy for HBV are scarce, highlighted by a patient describing the HBV community as “the forgotten people” (appendix p 1). Enhanced interdisciplinary action, which can have far-reaching benefits, is urgently needed to promote and diversify representation of people with lived experience of HBV infection (figure). We convened an interdisciplinary group to gather evidence and set out a framework for action, which we present here, considering the challenges and barriers to engagement, and reflecting on the need for patient voices to drive progress.
  • A midwifery-led prevalence programme for caesarean section surgical site infections

    Baxter, Elaine (Elsevier Ltd, 2021)
    Caesarean section (CS) is a common procedure accounting for 29% of all deliveries. Surgical site infections (SSI) are a risk with any surgical procedure. A CS SSI prevalence programme led by a midwife, who is also an infection prevention and control matron, was implemented to determine the rate of CS SSI within the trust. The initial CS SSI rate was 26% over a 3-month period (June-August 2012). Targeted interventions were put in place to reduce the CS SSI rate, and by 2019, it had decreased to 8%. Hospitals should consider implementing CS SSI surveillance and prevention programmes. Real benefits can be realized with minimal resources. Copyright © 2020 The Healthcare Infection Society. Published by Elsevier Ltd. All rights reserved.
  • A qualitative exploration of intentional nursing round models in the emergency department setting: Investigating the barriers to their use and success

    Kirk, Katherine (John Wiley and Sons Ltd, 2016)
    AIMS AND OBJECTIVES: This research aimed to investigate the use of intentional rounding within in the emergency department setting through exploration of the staff nurse experience. The focus was its implementation at a large teaching hospital in England., BACKGROUND: Research into the use of intentional rounding in any area of practice is minimal in the UK; however, a broader evidence base comes from America. The majority of this research supports the notion of intentional rounding for improved patient care and outcomes. Research from the UK is generally more contested. There is less literature on using intentional rounding specifically in the emergency department setting., DESIGN: Qualitative methodological approach., METHODS: Semi-structured interviews (n = 5) were completed with staff nurses working within an emergency department. A purposive sampling technique was used for recruitment. The data was then analysed using 'Framework Method of Qualitative Analysis' (Spencer et al. 2014)., RESULTS: The findings were categorised into four headings: (1) Improved patient experience, (2) Current unmanageability, (3) Adapting for the emergency department, (4) Benefits on achieving quality indicators and targets., CONCLUSION: The findings show that although staff felt the introduction of intentional rounding techniques could lead to improvements in patient safety and overall care experience, they also identified a range of difficulties and adaptations needed to ensure its success within this acute care environment., RELEVANCE TO CLINICAL PRACTICE: The research offers an insight into the staff's perceptions of using intentional rounding and also explains the practical difficulties faced by the nursing staff with potential suggestions that may help to address these problems. Benefits include more open communication between staff and patients and potentially more timely response to patient need, which positively impacts levels of safety and satisfaction. Barriers include lack of staff engagement, and the environmental factors and pressures, within the ED setting. Copyright © 2016 John Wiley & Sons Ltd.
  • A regional evaluation of the health care utilization and outcomes of children and young people with long-term ventilation needs

    Popejoy, Emma; Marufu, Takawira C; Thomas, David A; Gregory, Rachel; Frost, Adele; McNarry, Nicola; Hurley, Matthew; Manning, Joseph C (John Wiley and Sons Ltd, 2021)
    BACKGROUND: Globally, the number of children and young people (CYP) with long-term ventilation (LTV) needs is increasing, with high associated health care costs, due to frequent hospital admissions and contact with community health care services. However, demographic, health care utilization and outcome details of the CYP cared for locally is unknown. This study aimed to examine health care utilization and outcomes for this patient population., METHODS: Routinely collected data from 2014 to 2018 were extracted from local LTV team records and from hospital electronic patient records. Descriptive and inferential statistical analysis was performed using SPSS 17., RESULTS: A total of 112 CYP aged 0-17 years old were included in the evaluation. Sixty per cent (n = 67) commenced ventilation in hospital, and 62% (n = 69) had at-least one hospitalization event whilst they were on LTV, with a median length of stay of 3 days. Most hospitalizations were unplanned and respiratory in nature. Ninety-five per cent (n = 106) of CYP accessed at least one clinic appointment whilst on LTV, with a median of 20 outpatient clinic appointments during the study period. The majority of CYP received time-intensive support from LTV nurses and physiotherapists during the period that they received LTV. Minimal seasonal variation existed in relation to hospital admissions. Year on year increasing trend of hospital admissions was noted. The observed mortality rate was 3.6% (n = 4), 72.3% (n = 81) remained active on LTV, 14% (n = 16) were liberated from their ventilation and 9% (n = 10) transitioned to adult care by the end of the study., CONCLUSION: The study highlights the most common modes of health care utilization for CYP with LTV needs. To enable formalization of future resource planning and accurate assessment of health care utilization in evaluations, there is an urgent need to create a systematic approach for relevant LTV data collection. Copyright © 2020 John Wiley & Sons, Ltd.

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