ObjectivesTo understand stakeholders’ views regarding the content and design of paediatric clinical trial multimedia websites. To describe how this knowledge informed the development of the multimedia websites.DesignQualitative study comprising two rounds of interviews or focus groups, with thematic analysis of interview transcripts.ParticipantsSixty-two people (21 children and young people with long-term health conditions, 24 parents and 17 professionals).SettingOne UK children’s hospital and one UK Young Persons’ Advisory Group.ResultsWhen asked what was important in deciding whether to join a trial, children, young people and parents prioritised information about what participation would involve, what the trial was testing, potential benefits and risks of participation and knowing they could leave the trial if they later changed their minds. Young people and parents trusted trial teams to follow regulatory and quality requirements and therefore did not think such information was a priority for the websites, although logos of trusted organisations could lend credibility. Professionals largely concurred with these views. Children and young people advised on the importance of designing the multimedia website to ensure its appearance, tone and wording suited the intended audience and on using animated characters to facilitate children’s engagement.ConclusionsOur study provides insights into the information that families value when deciding about healthcare trial participation. It provides guidance on the design of information resources to appeal to children and young people, while also being acceptable to parents and professionals who are often gatekeepers of children’s access to information. Our findings will be of use to others developing similar multimedia websites. We report specific information needs and new visual preferences that are not usually addressed in printed trial information. Our work illustrates what qualitative research and participatory design practices can contribute to the development of information resources more generally.Trial registration numberISRCTN73136092; Pre-results.
Aquatic competencies have been proposed as a prevention strategy for children aged 2–4 years who are over-represented in drowning statistics. For this recommendation to be made, exploration of the connection between aquatic competencies and drowning is required. This review critically analyzed studies exploring aquatic competencies and their effect on drowning and/or injury severity in children 2–4 years. English language peer-reviewed literature up to 31 July 2019 was searched and the PRISMA process utilized. Data were extracted from twelve studies that fulfilled the inclusion criteria. Findings from this study included that aquatic competencies were not found to increase risk of drowning and demonstrated children aged 2–4 years are capable of developing age-appropriate aquatic competencies. Age-appropriate aquatic competencies extracted were propulsion/locomotion, flotation/buoyancy, water familiarization, submersion and water exits. The acquisition of these competencies holds benefit for the prevention of drowning. No evidence was found relating to injury severity. There was limited exploration of the relationship between aquatic competencies attainment and age-related developmental readiness. The review highlights the need for consistent measures of exposure, clarity around skills acquisition, better age-specific data (2 years vs. 3 years vs. 4 years), studies with larger sample sizes, further exploration of the dose–response relationship and consistent skill level testing across age groups. Further investigation is required to establish the efficacy of aquatic competencies as a drowning prevention intervention, as well as exploring the relationship between aquatic competencies and age-related developmental readiness. In conclusion, early evidence suggests aquatic competencies can help to reduce drowning.
Digital, multimedia information resources (MMIs) containing text, video, animation and pictures are a promising alternative to written participant information materials designed to inform children, adolescents and parents about healthcare trials, but little research has tested whether they are fit for purpose. This study employed a consecutive groups design and user testing questionnaire to assess whether participants were able to find and understand key information in multimedia resources. Two rounds of testing were completed. In each round, seven children aged 7–11 tested the MMI with a parent; six adolescents aged 12–17 and seven parents tested the MMI independently. After round 1, the resources were revised based on participant scores, behaviour and feedback. Round 1 identified problems with 2/10 information items (length of trial and use of insulin pump); only 3/20 participants could locate all information items without difficulty. After revisions, 14/20 participants scored a clear round. Information comprehension was high: 96% understood in round 1 and 99% in round 2. Participant feedback on the multimedia resources was positive, although presentation preferences varied. User testing was employed successfully with children, adolescents and parents to identify issues with, and improve, multimedia resources developed to inform potential healthcare trial participants.
SPORTDiscus and Google Scholar were searched for studies exploring fatal and non-fatal unintentional drowning by remoteness. Epidemiological data, common factors and prevention strategies were extracted and mapped to Australian standard geographical classifications (major cities, inner regional, outer regional, remote and very remote). Level of evidence was assessed using Grading of Recommendations Assessment, Development and Evaluation and prevention strategies aligned to the hierarchy of control. Result: Thirty-two studies satisfied inclusion criteria (66% reporting epidemiology; 59% risk factors; and 44% prevention strategies). All (100%) included studies were assessed very low against Grading of Recommendations Assessment, Development and Evaluation. Findings indicate rural populations (ie, excluding major cities) have higher rates of drowning positively correlated with increasing remoteness. Common factors included age (child), natural water bodies, undertaking boating and watercraft activities and alcohol consumption. While a range of prevention strategies has been proposed, only one study outlined a rural drowning prevention strategy which had been implemented and evaluated. Strategies were generally low on the hierarchy of control. Conclusion: Rural populations are proportionately overrepresented in drowning statistics. Proposed prevention strategies have unknown efficacy. Greater research into rural drowning of Australians is needed especially exploring behavioural motivations, program delivery, cost-effectiveness and evaluation. Development and use of a standard definition for remoteness are recommended. Rural populations use water extensively; therefore, there is an urgent need to keep them safe. K E Y W O R D S education/training, policy, public health, remote health, rurality Other 32 Metropolitan Country Other 34 Rural water hazards Other 37 Metropolitan Country Abbreviations: ARIA, Accessibility/Remoteness Index of Australia; ASGS, Australian Statistical Geography Standard; M, Modified; RRMA, rural, remote and metropolitan areas.
The seventh multi-stakeholder Paediatric Strategy Forum focused on chimeric antigen receptor (CAR) T-cells for children and adolescents with cancer. The development of CAR T-cells for patients with haematological malignancies, especially B-cell precursor acute lymphoblastic leukaemia (BCP-ALL), has been spectacular. However, currently, there are scientific, clinical and logistical challenges for use of CAR T-cells in BCP-ALL and other paediatric malignancies, particularly in acute myeloid leukaemia (AML), lymphomas and solid tumours. The aims of the Forum were to summarise the current landscape of CAR T-cell therapy development in paediatrics, too identify current challenges and future directions, with consideration of other immune effector modalities and ascertain the best strategies to accelerate their development and availability to children.Although the effect is of limited duration in about half of the patients, anti-CD19 CAR Tcells produce high response rates in relapsed/refractory BCP-ALL and this has highlighted previously unknown mechanisms of relapse. CAR T-cell treatment as first-or second-line
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