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BACKGROUND: In accordance with the focus on patient safety and quality in healthcare, continuing professional development (CPD) has received increasing levels of attention as a means to ensure physicians maintain their clinical competencies and are fit to practice. There is some evidence of a beneficial effect of CPD, though few studies have evaluated its effect within anesthesia. The primary aim of this systematic review was to establish which CPD activities anesthetists are engaged in and their effectiveness. The secondary aim was to explore which methods are employed to evaluate anesthetists' clinical performance. METHODS: Databases searched: Medline, Embase and Web of Science, in May 2023. Additional papers were identified through searching the references of included studies. Eligible studies included anesthetists, either exclusively or combined with other healthcare professionals, who underwent a learning activity or assessment method as part of a formalized CPD program or a stand-alone activity. Non-English language studies, non-peer reviewed studies and studies published prior to 2000 were excluded. Eligible studies were quality assessed and narratively synthesized, with results presented as descriptive summaries. RESULTS: A total of 2112 studies were identified, of which 63 were eligible for inclusion, encompassing more than 137,518 participants. Studies were primarily of quantitative design and medium quality. Forty-one studies reported outcomes of single learning activities, whilst 12 studies investigated different roles of assessment methods in CPD and ten studies evaluated CPD programs or combined CPD activities. A 36 of the 41 studies reported positive effects of single learning activities. Investigations of assessment methods revealed evidence of inadequate performance amongst anesthetists and a mixed effect of feedback. Positive attitudes and high levels of engagement were identified for CPD programs, with some evidence of a positive impact on patient/organizational outcomes. DISCUSSION: Anesthetists are engaged in a variety of CPD activities, with evidence of high levels of satisfaction and a positive learning effect. However, the impact on clinical practice and patient outcomes remains unclear and the role of assessment is less well-defined. There is a need for further, high-quality studies, evaluating a broader range of outcomes, in order to identify which methods are most effective to train and assess specialists in anesthesia.
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Competência Clínica , Aprendizagem , Humanos , Anestesistas , RetroalimentaçãoRESUMO
INTRODUCTION: The aim of this study was to gain consensus among young people with a stoma due to inflammatory bowel disease (IBD) on the priorities for the content of an intervention for the self-management of stoma-related distress. The current identification and management of distress in young people with a stoma is often suboptimal in clinical settings and there is a need for improved support resources. METHODS: Two consensus group meetings were carried out via online video conferencing, using nominal group technique. Participants generated, rated on a Likert scale and discussed, topics for inclusion in a future self-management intervention. RESULTS: Nineteen young people, aged 19-33, with a stoma due to IBD took part in one of two group meetings. Participants were located across England, Scotland, and Northern Ireland. Twenty-nine topics were generated by participants, seven of which reached consensus of ≥80%, that is, a mean of ≥5.6 on a 7-point Likert scale. These were: receiving advice from young people with lived experience of stoma surgery; advice on/addressing concerns about romantic relationships, sex and intimacy; information about fertility and pregnancy related to stoma surgery; stoma 'hacks', for example, useful everyday tips regarding clothing, making bag changes easier and so forth; reflecting on and recognising own emotional response to surgery; tips on managing the stoma during the night; and processing trauma related to the illness and surgery journey. CONCLUSIONS: Findings extend previous research on young people's experiences of stoma surgery, by generating consensus on young people's priorities for managing distress related to surgery and living with a stoma. These priorities include topics not previously reported in the literature, including the need for information about fertility and pregnancy. Findings will inform the development of a self-management resource for young people with an IBD stoma and have relevance for the clinical management of stoma-related distress in this population. PATIENT OR PUBLIC CONTRIBUTION: Three patient contributors are co-authors on this paper, having contributed to the study design, interpretation of results and writing of the manuscript. The study's Patient and Public Involvement and Engagement advisory group also had an integral role in the study. They met with the research team for four 2-h virtual meetings, giving input on the aims and purpose of the study, recruitment methods, and interpretation of findings. The group also advised on the age range for participants. The views of young people with a stoma are the central component of the study reported in this paper, which aims to gain consensus among young people with an IBD stoma on their priorities for the content of a resource to self-manage distress related to stoma surgery.
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Doenças Inflamatórias Intestinais , Autogestão , Feminino , Gravidez , Humanos , Adolescente , Emoções , Consenso , Inglaterra , Doenças Inflamatórias Intestinais/cirurgia , Doenças Inflamatórias Intestinais/psicologiaRESUMO
BACKGROUND: This paper describes and critically reflects on how children and young people (CYP) acted as public advisors to coproduce health information materials about Long Covid for younger audiences. This work was underpinned by the Lundy model, a framework which provides guidance on facilitating CYP to actively contribute to matters which affect them. METHODS: Coproduction activity sessions took place with CYP in schools as well as video conferences with a CYP stakeholder group and CYP with Long Covid. Activities encouraged CYP to focus on the content, format, and design of materials and used problem-based and collaborative learning to encourage engagement with the project. Using a range of methods and open discussion, CYP codesigned a series of Long Covid health information materials for younger audiences. RESULTS: Sixty-six CYP (aged 10-18), and two young adults were involved. CYP codesigned specifications for the final materials and provided feedback on early designs. The project led to the development of a series of health information materials targeted at CYP: a short social media campaign with six short videos and a 12-page illustrated leaflet about Long Covid; released on social media and distributed in local area. All the CYP were positive about the project and their involvement. DISCUSSION: Involving CYP led to the development of innovative and engaging information materials (influence). Developing rapport was important when working with CYP and this was facilitated by using approaches and activities to establish an environment (space) where the CYP felt comfortable sharing their views (voice) and being listened to (audience) by the adults in the project. Working with external groups who are willing to share their expertise can help the meaningful involvement of voices 'less heard'. PUBLIC CONTRIBUTION: One CYP coapplicant contributed to the project design and facilitation of PPIE sessions, 64 CYP were involved in the PPIE sessions to design and feedback on materials. Two young adult media producers worked with CYP to produce these materials, another CYP supported this process. Three public contributors were involved in the preparation of this manuscript.
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COVID-19 , Humanos , Adolescente , Criança , Feminino , Masculino , Mídias Sociais , Informação de Saúde ao Consumidor , SARS-CoV-2RESUMO
In this guide we provide instructions and recommendations about creating and running escape rooms for healthcare education. In recent years there has been a growing interest in adopting escape rooms as an educational tool to be included in healthcare curricula, and we attempt to explain why and how these tools are fit for the particularities of this type of education. We first describe the steps that a design team will have to follow to create an educational escape room from scratch, from core characteristics like target audience and learning goals to actual puzzle design and testing. We then continue by providing recommendations to operators and lecturers about how to run such escape room as part of an overall teaching session that also includes a lecture, briefing, debriefing and evaluation. We finalise this guide by listing a set of tools for validating and evaluating these types of escape rooms.
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BACKGROUND: Clinical placement is an essential component of nursing education, providing students with the opportunity to apply theoretical knowledge to practice. However, challenges such as lack of supervision and passive involvement in tasks can hinder the learning experience. Supplementing clinical placement with simulation-based training (SBT) has been explored as a potential solution, though this approach has been underexplored within primary care. This study aimed to explore the educational value of a supplemental SBT course for nursing students during primary care placement, as well as the adaption of this approach to a primary care setting. METHODS: A qualitative descriptive study was conducted at a medical education and simulation academy in Denmark. Sixth-semester nursing students on placement in primary care were invited to participate. The intervention consisted of a three-day simulation course covering core nursing competencies and common clinical conditions encountered within primary care. Simulation adopted a standardised patient approach. Data was collected using focus group interviews, which was analysed using inductive thematic analysis. RESULTS: Thirty-one nursing students participated in the study. Seven themes emerged from the analysis, including perceptions, educational value, simulation adjustments to primary care, educators' competencies, learning needs within primary care, challenges of clinical placement and career guidance. Generally, participants perceived the intervention positively, appreciating its relevance to their clinical placement and its educational impact in this context. Participants also provided insights into the adaptation of SBT to a primary care setting, as well as nursing students' learning needs within this context. CONCLUSION: The findings indicate that the intervention had a positive impact on participant competencies within this context and enhanced their clinical practice within primary care. Furthermore, the results inform educators on how to effectively employ primary care-related SBT. Overall, this study supports the need for an increased application of SBT within primary care. TRIAL REGISTRATION: Not relevant.
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BACKGROUND AND PURPOSE: Children and young people (CYP) with epilepsy see healthcare professionals (HCPs) for management of their seizures but may require information, advice and support with a range of broader topics. The purpose of the survey was to identify from HCPs, which topics CYP with epilepsy and their parents/carers ask about other than seizure management, and how adequately HCPs feel able to support them with these topics. METHOD: A cross-sectional online survey was used to collect data. Adverts which included a link to the survey were shared via social media channels, professional networks and United Kingdom (UK)-based epilepsy networks. Eighty-eight HCPs in the UK (who worked with CYP with epilepsy and their parents/carers) completed the survey. Quantitative data are presented descriptively. Qualitative data (free-text responses) were reflexively thematically analysed. RESULTS: CYP with epilepsy and their parents/carers were reported to ask HCPs for information, advice and support about a range of topics, most commonly, cognition and mental health. CYP were reported as also frequently asking about aspects of their social life while parents/carers commonly asked about sleep. HCPs varied in how able they felt to adequately support families about these topics, as well as in their views about which resources could be most useful. Having insufficient time and a lack of suitable services and resources to refer to, or draw upon, were key barriers to HCPs being able to support CYP and their families. DISCUSSION: Findings highlight the broad array of topics CYP with epilepsy and their families are reported as seeking support for. HCPs identified gaps in services and their abilities to meet those needs. There appeared to be a mismatch between the support that families were seeking and the ability of HCPs to meet these needs. Findings have implications for how HCPs could best be supported to deal with topics raised by CYP and families in clinic, highlighting the potential usefulness of informational resources on key topics for HCPs, parents/carers and CYP.
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Cuidadores , Epilepsia , Criança , Humanos , Adolescente , Cuidadores/psicologia , Estudos Transversais , Pais/psicologia , Epilepsia/diagnóstico , Epilepsia/terapia , Epilepsia/psicologia , Convulsões , Encaminhamento e Consulta , Atenção à SaúdeRESUMO
Children continue to experience harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. The international ISupport collaboration aimed to develop standards to outline and explain good procedural practice and the rights of children within the context of a clinical procedure. The rights-based standards for children undergoing tests, treatments, investigations, examinations and interventions were developed using an iterative, multi-phased, multi-method and multi-stakeholder consensus building approach. This consensus approach used a range of online and face to face methods across three phases to ensure ongoing engagement with multiple stakeholders. The views and perspectives of 203 children and young people, 78 parents and 418 multi-disciplinary professionals gathered over a two year period (2020-2022) informed the development of international rights-based standards for the care of children having tests, treatments, examinations and interventions. The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds. Conclusion: This is the first study of its kind which outlines international rights-based procedural care standards from multi-stakeholder perspectives. The standards offer health professionals and educators clear evidence-based tools to support discussions and practice changes to challenge prevailing assumptions about holding or restraining children and instead encourage a focus on the interests and rights of the child. What is Known: ⢠Children continue to experience short and long-term harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. ⢠Professionals report uncertainty and tensions in applying evidence-based practice to children's procedural care. What is New: ⢠This is the first study of its kind which has developed international rights-based procedural care standards from multi-stakeholder perspectives. ⢠The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.
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Consenso , Técnicas e Procedimentos Diagnósticos , Pediatria , Adolescente , Humanos , Técnicas e Procedimentos Diagnósticos/ética , Técnicas e Procedimentos Diagnósticos/normas , Criança , Pediatria/ética , Pediatria/normasRESUMO
BACKGROUND: Comorbid distress in adolescents and young adults with physical long-term conditions (LTCs) is common but can be difficult to identify and manage. Self-directed self-management interventions to reduce distress and improve wellbeing may be beneficial. It is unknown, however, which intervention characteristics are successful in supporting young people. This rapid review aimed to identify characteristics of self-directed self-management interventions that aimed, in whole or part, to address distress, wellbeing or self-efficacy in this population. METHODS: A systematic search was conducted for relevant controlled studies in six databases. Data on study settings, population, intervention characteristics, outcome measures, process measures and summary effects were extracted. The risk of bias was assessed using the Cochrane Risk of Bias tool v1, and the strength of evidence was rated (informed by Grading of Recommendations, Assessment, Development and Evaluations). Patient and public involvement members supported the review process, including interpretation of results. The rapid review was registered with PROSPERO (ID: CRD42021285867). RESULTS: Fourteen studies were included, all of which were randomised trials. Heterogeneity was identified in the health conditions targeted; type of intervention; outcome measures; duration of intervention and follow-up. Three had distress, wellbeing or self-efficacy as their primary outcome. Four modes of delivery were identified across interventions-websites, smartphone applications, text messages and workbooks; and within these, 38 individual components. Six interventions had a significant benefit in mental health, wellbeing or self-efficacy; however, intervention characteristics were similar for beneficial and non-beneficial interventions. CONCLUSIONS: There is a paucity of interventions directly targeting distress and wellbeing in young people with physical LTCs. In those identified, the heterogeneity of interventions and study design makes it difficult to identify which characteristics result in positive outcomes. We propose the need for high-quality, evidence-based self-management interventions for this population; including (1) more detailed reporting of intervention design, content and delivery; (2) robust process evaluation; (3) a core outcome set for measuring mental health and wellbeing for self-management interventions and (4) consistency in follow up periods. PUBLIC CONTRIBUTION: Seven young people with an LTC were involved throughout the rapid review, from the development of the review protocol where they informed the focus and aims, with a central role in the interpretation of findings.
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Aplicativos Móveis , Autogestão , Envio de Mensagens de Texto , Adolescente , Adulto Jovem , Humanos , Saúde MentalRESUMO
BACKGROUND: Provision that aims to promote the social, emotional, and mental wellbeing of children and young people (including their mental health) is increasingly implemented in education settings. As researchers, policymakers, and practitioners explore the complexities of promotion and prevention provision in practice, it is critical that we include and amplify children and young people's perspectives. In the current study, we explore children and young people's perceptions of the values, conditions, and foundations that underpin effective social, emotional, and mental wellbeing provision. METHODS: We engaged in remote focus groups with 49 children and young people aged 6-17 years across diverse settings and backgrounds, using a storybook in which participants constructed wellbeing provision for a fictional setting. ANALYSIS: Using reflexive thematic analysis, we constructed six main themes presenting participants' perceptions: (1) recognising and facilitating the setting as a caring social community; (2) enabling wellbeing to be a central setting priority; (3) facilitating strong relationships with staff who understand and care about wellbeing; (4) engaging children and young people as active partners; (5) adapting to collective and individual needs; and (6) being discreet and sensitive to vulnerability. CONCLUSIONS: Our analysis presents a vision from children and young people of an integrated systems approach to wellbeing provision, with a relational, participatory culture in which wellbeing and student needs are prioritised. However, our participants identified a range of tensions that risk undermining efforts to promote wellbeing. Achieving children and young people's vision for an integrated culture of wellbeing will require critical reflection and change to address the current challenges faced by education settings, systems, and staff.
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Emoções , Saúde Mental , Humanos , Criança , Adolescente , Grupos Focais , EstudantesRESUMO
PURPOSE OF THE ARTICLE: Health professions education is failing to prepare students to practice sustainable healthcare despite the climate crisis an urgent provision of educational opportunities is required. This systematic review aimed to synthesise educational approaches applied to sustainable healthcare education within health professions curricula and critically evaluate their impact. MATERIALS AND METHODS: Databases searched: APA PsycInfo, BEI, CINAHL, Embase, ERIC, Medline, Scopus, Cochrane Library, Web of Science, BASE, DART-Europe, EThOS and ProQuest. Secondary searching techniques were also utilised, with searching conducted October 2021. Eligible studies included healthcare professional students/trainees, exposed to sustainable healthcare education, and evaluated through impact on knowledge, attitudes or skills. Empirical studies of any publication status were included. Non-English language studies were excluded. Eligible studies were quality assessed using JBI (2022) critical appraisal checklists and synthesised narratively. RESULTS: Twenty-three studies were included, comprising 3343 participants and seven health professions. Studies primarily adopted a quasi-experimental design and demonstrated variable quality. Most common educational approaches were workshops and clinical skills sessions, though eight different approaches were observed. Positive impacts were achieved for knowledge, attitudes and skills. CONCLUSIONS: Diverse approaches have been applied to sustainable healthcare education, though no superior approach is evident. Instead, many effective approaches are outlined, to be adopted in alignment with the learning outcomes.
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Atenção à Saúde , Aprendizagem , Humanos , Escolaridade , Estudantes , Instalações de SaúdeRESUMO
BACKGROUND: Given the increasing complexity of tasks transferred to primary care, discipline-specific educational opportunities are required for those working within this context. Simulation-based training (SBT) is widely applied within a hospital setting, underpinned by extensive research. However, little is known about the transfer of simulations' utility to primary care. This systematic review sought to determine which SBT approaches are adopted for continuing professional development within primary care and appraise their impact. METHODS: Medline, Embase, CINAHL and Web of Science databases were searched, with additional articles obtained through secondary searching. Eligible studies employed and evaluated a simulation-based educational intervention for fully qualified healthcare professionals, working within primary care. Included studies were quality assessed using the Mixed Methods Appraisal Tool (v18) and their findings narratively synthesised. RESULTS: Forty-nine studies were included, sampling 4,601 primary care health professionals. Studies primarily adopted a quantitative design and demonstrated variable quality. Simulation approaches comprised standardised patients (n = 21), role-play (n = 14), virtual (n = 6), manikin (n = 5) and mixed manikin/standardised patients (n = 3). Efficacy was evaluated across Kirkpatrick levels and demonstrated a positive impact for knowledge-, skills- and attitude-based outcomes, though this was limited in select studies. DISCUSSION: SBT has been adopted in the education of the spectrum of health professionals working within primary care, with the most common approach being standardised patients. Simulation delivers an acceptable and effective educational method, demonstrating a positive impact across various learning objectives. Further research assessing the impact at an organisational- and patient-level is required.
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Pessoal de Saúde , Treinamento por Simulação , Humanos , Pessoal de Saúde/educação , Aprendizagem , Atitude , Atenção Primária à SaúdeRESUMO
BACKGROUND: Regulators increasingly use formalized programs that are based on continuing professional development (CPD) activities to ensure that physicians are fit to practice. There is convincing evidence regarding the positive effects of CPD activities on performance and patient outcomes. However, there is limited available studies, investigating its effect in anesthesia, specifically. Moreover, although there exists considerable evidence linking specific CPD activities to improved performance, only few studies have investigated the effect of combinations of activities, or formalized systems, as a whole. Consequently, to address this uncertainty regarding the impact of CPD activities, within anesthesiology, this systematic review aims to establish which activities anesthesiologists are engaged in and their impact on clinical competence and subsequent patient outcomes. METHODS: A systematic review of the current literature regarding CPD for fully qualified anesthesiologists will be undertaken. Characteristics of the included studies will be summarized descriptively, and the screening process will be outlined using the preferred reporting items for systematic reviews and meta-analysis flow diagram. Given the diverse methods adopted within medical education research, it is anticipated that there will be significant heterogeneity between the included studies and therefore, a meta-analysis will not be possible and a narrative synthesis approach will be usd. The outcomes of interest include type of CPD learning activity and/or assessment method anesthesiologists are engaged in; and their effectiveness, either as standalone activities or as part of formalized systems. CONCLUSION: The aim of the study was to give an overview of the breadth and nature of CPD activities, and their effects on fully qualified anesthesiologists' clinical competences and patient outcomes.
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Anestesiologistas , Anestesiologia , Competência Clínica , Humanos , Aprendizagem , Metanálise como Assunto , Revisões Sistemáticas como AssuntoRESUMO
BACKGROUND: Infectious illness is the biggest cause of death in children due to a physical illness, particularly in children under five years. If mortality is to be reduced for this group of children, it is important to understand factors affecting their pathways to hospital. The aim of this study was to retrospectively identify organisational and environmental factors, and individual child, family, and professional factors affecting timing of admission to hospital for children under five years of age with a serious infectious illness (SII). METHODS: An explanatory modified grounded theory design was used in collaboration with parents. Two stages of data collection were conducted: Stage 1, interviews with 22 parents whose child had recently been hospitalised with a SII and 14 health professionals (HPs) involved in their pre-admission trajectories; Stage 2, focus groups with 18 parents and 16 HPs with past experience of SII in young children. Constant comparative analysis generated the explanatory theory. RESULTS: The core category was 'navigating uncertain illness trajectories for young children with serious infectious illness'. Uncertainty was prevalent throughout the parents' and HPs' stories about their experiences of navigating social rules and overburdened health services for these children. The complexity of and lack of continuity within services, family lives, social expectations and hierarchies provided the context and conditions for children's, often complex, illness trajectories. Parents reported powerlessness and perceived criticism leading to delayed help-seeking. Importantly, parents and professionals missed symptoms of serious illness. Risk averse services were found to refer more children to emergency departments. CONCLUSIONS: Parents and professionals have difficulties recognising signs of SII in young children and can feel socially constrained from seeking help. The increased burden on services has made it more difficult for professionals to spot the seriously ill child.
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Doenças Transmissíveis , Pais , Pré-Escolar , Família , Teoria Fundamentada , Humanos , Estudos Retrospectivos , IncertezaRESUMO
PURPOSE: Adolescents and young adults (AYA) with Inflammatory Bowel Disease (IBD) report higher depressive symptoms and anxiety compared to healthy controls, with disease severity and abdominal pain being important factors. In the current study, building on what young people had told us in our previous work, we examined whether embarrassment of the condition, social self-efficacy, and friendship quality mediated the relationship between abdominal pain and disease severity, and mental health/well-being. We also included loneliness as a component of well-being. METHODS: Data on depression, anxiety, loneliness, friendship quality, social self-efficacy, and disease embarrassment were collected from 130 AYA with IBD ages 14-25 years; data on disease severity and abdominal pain were taken from their medical records. Structural Equation Modeling (SEM) was used to test the relationships between the variables. RESULTS: Using SEM, we established that higher IBD disease activity negatively impacted how AYA felt about their friendships and how embarrassed they were about their condition; embarrassment then influenced reports of mental health, including loneliness. Abdominal pain, disease onset, and social self-efficacy directly predicted internalising problems. CONCLUSION: In this sample of 14-25-year-old patients with IBD, specifics about the disease (severity and pain) predicted poorer mental health, suggesting discussion of mental health should be part of the clinical dialogue between patient and consultant. In addition, embarrassment about their condition increased depression, anxiety, and loneliness, mediating the relationship between disease severity and well-being. Thus, it is important to consider how perceived stigma affects those with chronic illness, and those issues should be explored in clinic.
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Ansiedade/psicologia , Depressão/psicologia , Constrangimento , Doenças Inflamatórias Intestinais/psicologia , Solidão/psicologia , Qualidade de Vida/psicologia , Adolescente , Adulto , Idade de Início , Feminino , Humanos , Doenças Inflamatórias Intestinais/epidemiologia , Masculino , Índice de Gravidade de Doença , Reino Unido , Adulto JovemRESUMO
OBJECTIVE: The objectives of the study were to (1) map questions in epilepsy-specific patient-reported outcome measures (PROMs) of children's health-related quality of life (HRQoL) to a proposed core outcome set (COS) for childhood epilepsy research and (2) gain insight into the acceptability of two leading candidate PROMs. METHOD: We identified 11 epilepsy-specific PROMs of children's HRQoL (17 questionnaire versions) in a previous systematic review. Each item from the PROMs was mapped to 38 discrete outcomes across 10 domains of the COS: seizures, sleep, social functioning, mental health, cognition, physical functioning, behavior, adverse events, family life, and global quality of life. We consulted with three children with epilepsy and six parents of children with epilepsy in Patient Public Involvement and Engagement (PPIE) work to gain an understanding of the acceptability of the two leading PROMs from our review of measurement properties: Quality of Life in Childhood Epilepsy (QOLCE-55) and Health-Related Quality of Life Measure for Children with Epilepsy (CHEQOL). RESULTS: Social Functioning is covered by all PROMs except DISABKIDS and G-QOLCE and Mental Health is covered by all PROMs except G-QOLCE and Hague Restrictions in Childhood Epilepsy Scale (HARCES). Only two PROMs (Epilepsy and Learning Disability Quality of Life (ELDQOL) and Glasgow Epilepsy Outcome Scale (GEOS-YP)) have items that cover the Seizure domain. The QOLCE-55 includes items that cover the domains of Physical Functioning, Social Functioning, Behavior, Mental Health, and Cognition. The CHEQOL parent and child versions cover the same domains as QOLCE-55 except for Physical Functioning and Behavior, and the child version has one item that covers the discrete outcome of Overall Quality of Life and one item that covers the discrete outcome of Relationship with parents and siblings. The QOLCE-55 parent version was acceptable to the parents we consulted with, and CHEQOL parent and child versions were described as acceptable to our child and parent advisory panel members. SIGNIFICANCE: Mapping items from existing epilepsy-specific PROMs for children is an important step in operationalizing our COS for childhood epilepsy research, alongside evaluation of their measurement properties. Two leading PROMS, QOLCE-55 and CHEQOL, cover a wide range of domains from our COS and would likely be used in conjunction with assessment tools selected for specific study objectives. The PPIE work provided practical insights into the administration and acceptability of candidate PROMs in appropriate context. We promote our COS as a framework for selecting outcomes and PROMs for future childhood epilepsy evaluative research.
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Epilepsia , Qualidade de Vida , Criança , Epilepsia/terapia , Humanos , Pais , Medidas de Resultados Relatados pelo Paciente , Inquéritos e QuestionáriosRESUMO
BACKGROUND: There is increasing interest in finding novel approaches to improve the preparation of children for hospital procedures such as surgery, x-rays, and blood tests. Well-prepared and informed children have better outcomes (less procedural anxiety and higher satisfaction). A digital therapeutic (DTx) platform (Xploro) was developed with children to provide health information through gamification, serious games, a chatbot, and an augmented reality avatar. OBJECTIVE: This before and after evaluation study aims to assess the acceptability of the Xploro DTx and examine its impact on children and their parent's procedural knowledge, procedural anxiety, and reported experiences when attending a hospital for a planned procedure. METHODS: We used a mixed methods design with quantitative measures and qualitative data collected sequentially from a group of children who received standard hospital information (before group) and a group of children who received the DTx intervention (after group). Participants were children aged between 8 and 14 years and their parents who attended a hospital for a planned clinical procedure at a children's hospital in North West England. Children and their parents completed self-report measures (perceived knowledge, procedural anxiety, procedural satisfaction, and procedural involvement) at baseline, preprocedure, and postprocedure. RESULTS: A total of 80 children (n=40 standard care group and n=40 intervention group) and their parents participated in the study; the children were aged between 8 and 14 years (average 10.4, SD 2.27 years) and were attending a hospital for a range of procedures. The children in the intervention group reported significantly lower levels of procedural anxiety before the procedure than those in the standard group (two-tailed t63.64=2.740; P=.008). The children in the intervention group also felt more involved in their procedure than those in the standard group (t75=-2.238; P=.03). The children in the intervention group also reported significantly higher levels of perceived procedural knowledge preprocedure (t59.98=-4.892; P=.001) than those in the standard group. As for parents, those with access to the Xploro intervention reported significantly lower levels of procedural anxiety preprocedure than those who did not (t68.51=1.985; P=.05). During the semistructured write and tell interviews, children stated that they enjoyed using the intervention, it was fun and easy to use, and they felt that it had positively influenced their experiences of coming to the hospital for a procedure. CONCLUSIONS: This study has shown that the DTx platform, Xploro, has a positive impact on children attending a hospital for a procedure by reducing levels of procedural anxiety. The children and parents in the intervention group described Xploro as improving their experiences and being easy and fun to use.
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Ansiedade/psicologia , Serviços de Saúde da Criança/organização & administração , Criança Hospitalizada/psicologia , Hospitais Pediátricos/normas , Adolescente , Criança , Feminino , Humanos , MasculinoRESUMO
OBJECTIVE: Establishing a core set of outcomes to be evaluated and reported in intervention trials aims to improve the usefulness of health research. There is no established core outcome set (COS) for childhood epilepsies. The aim of this study was to select a COS to be used in evaluative research of interventions for children with rolandic epilepsy (RE). METHODS: We followed guidance from the COMET (Core Outcome Measures in Effectiveness Trials) Initiative. First, we identified outcomes that had been measured in research through a systematic review. Second, young people with RE, parents, and professionals were invited to take part in a Delphi survey in which participants rated the importance of candidate outcomes. Last, a face-to-face meeting was convened to seek consensus on which outcomes were critical to include and to ratify the final COS. RESULTS: From 37 eligible papers in the review, we identified and included 48 candidate outcomes in the survey. We sent invitations to 165 people registered to take part in the survey; of these, 102 (62%) completed Round 1, and 80 (78%) completed Round 2 (three young people, 16 parents, 61 professionals). In Round 2 we included four additional outcomes suggested by participants in Round 1. The consensus meeting included two young people, four parents, and nine professionals who were eligible to vote and ratified the COS as 39 outcomes across 10 domains. SIGNIFICANCE: Our methodology was a proportionate and pragmatic approach toward producing a COS for evaluating research on interventions aiming to improve the health of children with RE.
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Técnica Delphi , Epilepsia Rolândica/terapia , Avaliação de Resultados em Cuidados de Saúde/métodos , Projetos de Pesquisa , Revisões Sistemáticas como Assunto , Adulto , Cuidadores/psicologia , Criança , Consenso , Feminino , Pessoal de Saúde/psicologia , Humanos , Masculino , Avaliação de Resultados da Assistência ao Paciente , Pacientes/psicologia , Resultado do TratamentoRESUMO
BACKGROUND: Children often have unmet information needs when attending hospital, and this can cause them anxiety and uncertainty. If children are prepared and informed about what will happen during a procedure, they tend to have a better experience. Finding out what children want to know before they attend hospital for procedures could provide significant benefits for children, their families, and healthcare professionals. This study set out to investigate children's perspectives of what information is important and valuable to know before attending hospital for a planned procedure. METHODS: A "write and tell" activity sheet underpinned a semistructured qualitative interview with children attending hospital for a planned procedure. The interview focussed on the information children thought was important to know before a procedure. Data were analysed using content analysis techniques. RESULTS: One hundred six children aged between 8 and 12 years old participated in the interviews. The children identified 616 pieces of information they thought would be of value to children attending hospital for procedures. These were inductively coded into three types of information: procedural, sensory, and self-regulation. Children want to know detailed procedural and sensory information to actively construct a script of a procedure and then build on this with information about specific strategies to help them cope with and self-regulate the situation. CONCLUSION: This study has identified three types of information children recognize as important in preprocedural preparation. Children construct an understanding of a planned procedure through actively scaffolding procedural, sensory, and self-regulation information.
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Atitude Frente a Saúde , Serviços de Saúde da Criança/organização & administração , Criança Hospitalizada/psicologia , Educação de Pacientes como Assunto/métodos , Adaptação Psicológica , Ansiedade/etiologia , Ansiedade/prevenção & controle , Criança , Feminino , Hospitais Pediátricos , Humanos , Entrevistas como Assunto , Masculino , Avaliação das Necessidades , Dor Processual/psicologia , Assistência Centrada no Paciente , Pesquisa Qualitativa , Reino UnidoRESUMO
AIM: The aim of this study was to seek views of UK children's and adult hospices on the availability and challenges of providing services for young adults with life-limiting conditions. BACKGROUND: Internationally, there are a growing number of young adults with life-limiting conditions and/or complex needs which are degenerative, progressive and diverse and involve complex life-long symptom, medication management as well as palliative care. There are 55,721 young adults, aged 18-40 in England, which continues to increase. The hospice sector is experiencing demands to extend services for this population despite concerns about the appropriateness of adult hospices and their nursing staff to provide care for the complex and unfamiliar conditions of this patient group. Evidence is needed of hospices' views and the main challenges faced providing services for young adults. DESIGN: Descriptive cross-sectional survey. METHODS: xChildren and adult hospices completed an online survey exploring service provision and their views of respite care for young adults with life-limiting conditions from 18 years old and onward. Data were collected between October 2015 - February 2016. FINDINGS: Respondents (N = 76 hospices) reported that children's hospices predominantly provided short breaks and end-of-life care; adult hospices provided mainly symptom management, end-of-life care and day services. Main challenges were lack of existing adult respite services; lack of funding and capacity; lack of a skilled workforce in adult hospices; and the need for better integrated service provision. CONCLUSION: Examples of good collaborative working were reported. With an increasing population of young adults and pressure on families, it is vital that services work together to find sustainable solutions to the challenges.
RESUMO
THEORETICAL PRINCIPLES: Against a backdrop of increasing debate regarding children's voice and position within health care and the struggle to effectively implement Family-Centred Care (FCC) in practice, the concept of Child-Centred Care (CCC) has emerged. PHENOMENA ADDRESSED: The purpose of this paper is to explore the concept of CCC and its potential theoretical alignment with an ecological approach to health care. RESEARCH LINKAGES: The paper will draw on practice-based research, highlighting the differences and similarities of CC against the more established FCC. Arguments will be presented to show that rather than competing with FCC, CCC has the potential to complement or extend traditional FCC, by placing children in a more prominent and central position than that which they currently hold within health care.