'We should have been told what would happen': Children's and parents' procedural knowledge levels and information-seeking behaviours when coming to hospital for a planned procedure.

Children continue to be poorly prepared and informed about clinical procedures, despite increased evidence of the worth of preparation and the availability of information resources. This study used a concurrent mixed-methods approach to explore the information accessed by children and their parents before attending hospital for a procedure. Information was collected separately from 40 children (aged between 8 and 12 years) and their parents using a paper booklet to examine self-reported perceived procedural knowledge and information-seeking behaviours. Data were analysed using descriptive statistics and content analysis techniques. The findings indicate that many children (70%, n = 28) and their parents (65%, n = 26) have low procedural knowledge levels. The majority of children (85%, n = 36) reported not receiving or seeking information about their procedure, despite identifying a desire and preference for more information. This study shows a mismatch between the current provision of procedural information and children and parents' expectations that information will be provided directly to them by health professionals. In order for this 'information hole' to be filled, there needs to be a concerted effort to develop and systematically use meaningful information materials and for children and their parents to have the opportunity to discuss their procedural knowledge with health professionals.

The Acceptability and Impact of the Xploro Digital Therapeutic Platform to Inform and Prepare Children for Planned Procedures in a Hospital: Before and After Evaluation Study.

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.

IMPlementation of An online Relatives' Toolkit for psychosis or bipolar (IMPART study): iterative multiple case study to identify key factors impacting on staff uptake and use.

BACKGROUND: Despite the potential of digital health interventions to improve the delivery of psychoeducation to people with mental health problems and their relatives, and substantial investment in their development, there is little evidence of successful implementation into clinical practice. We report the first implementation study of a digital health intervention: Relatives Education And Coping Toolkit (REACT), into routine mental healthcare. Our main aim was to identify critical factors affecting staff uptake and use of this online self-management tool for relatives of people with psychosis or bipolar. METHODS: A mixed-methods, theory-driven (Normalisation Process Theory), iterative multiple case study approach using qualitative analysis of interviews with staff and quantitative reporting of uptake. Carer researchers were part of the research team. RESULTS: In all, 281 staff and 159 relatives from Early Intervention teams across six catchment areas (cases) in England registered on REACT; 129 staff took part in qualitative interviews. Staff were positive about REACT helping services improve support and meet clinical targets. Implementation was hindered by: high staff caseloads and difficulties prioritising carers; perception of REACT implementation as research; technical difficulties using REACT; poor interoperability with trust computer systems and care pathways; lack of access to mobile technology and training; restricted forum populations; staff fears of risk, online trolling, and replacement by technology; and uncertainty around REACT's long-term availability. CONCLUSIONS: Digital health interventions, such as REACT, should be iteratively developed, evaluated, adapted and implemented, in partnership with the services they aim to support, and as part of a long term national strategy to co-develop integrated technology-enabled mental healthcare. Implementation strategies must instil a sense of ownership for staff and ensure they have adequate IT training, appropriate governance protocols for online working, and adequate mobile technologies. Wider contextual factors including adequate funding for mental health services and prioritisation of carer support, also need to be addressed for successful implementation of carer focussed digital interventions. TRIAL REGISTRATION: Study registration: ISCTRN 16267685.

'If I knew what was going to happen, it wouldn't worry me so much': Children's, parents' and health professionals' perspectives on information for children undergoing a procedure.

Children undergoing procedures such as blood tests and X-rays experience less anxiety and upset if they are well prepared and informed. Currently the provision of information about procedures can be ad hoc and there are barriers to children understanding this information. This study explored the perspectives of 32 children undergoing procedures (aged between 8 and 12 years), 27 parents and 19 health professionals on the provision of preparatory information to children. Qualitative interviews, prompted by visual images, were thematically analysed. The three themes, 'accessing information', 'understanding information' and 'using information', resonated with the central tenets of health literacy. Children reported mainly accessing information second-hand through their parents and demonstrated misconceptions about their procedure. Children identified that procedural information would help them to know what was going to happen and enable them to feel less worried and scared about their procedure. This study highlights that children can have low levels of health literacy in relation to a planned procedure. Their health literacy in this context is heavily influenced by the adults (parents and health professionals) around them. There needs to be further work conducted, informed directly by children, to improve the health literacy of children attending hospital for planned procedures.

The information needs of children having clinical procedures in hospital: Will it hurt? Will I feel scared? What can I do to stay calm?

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.

Factors affecting implementation of digital health interventions for people with psychosis or bipolar disorder, and their family and friends: a systematic review.

Digital health interventions present an important opportunity to improve health care for people with psychosis or bipolar disorder, but despite their potential, integrating and implementing them into clinical settings has been difficult worldwide. This Review aims to identify factors affecting implementation of digital health interventions for people affected by psychosis or bipolar disorder. We searched seven databases and synthesised data from 26 studies using the Consolidated Framework for Implementation Research. Attitudes and beliefs about interventions were crucial factors for both staff and service users, with negative attitudes and scepticism resulting in a lack of motivation to engage with interventions or complete them. The complexity of the interventions was a barrier for people with psychiatric symptoms, low premorbid intelligence quotient, or minimal information technology skills. The accessibility and adaptability of interventions were key facilitators, but insufficient resources, finances, and staff time were barriers to implementation. Interventions need to be user friendly and adaptable to the needs and capabilities of people with psychosis or bipolar disorder, and the staff who support their implementation. Service users and staff should cofacilitate the process of developing and implementing the interventions.

IMPlementation of A Relatives' Toolkit (IMPART study): an iterative case study to identify key factors impacting on the implementation of a web-based supported self-management intervention for relatives of people with psychosis or bipolar experiences in a National Health Service: a study protocol.

BACKGROUND: Web-based interventions to support people to manage long-term health conditions are available and effective but rarely used in clinical services. The aim of this study is to identify critical factors impacting on the implementation of an online supported self-management intervention for relatives of people with recent onset psychosis or bipolar disorder into routine clinical care and to use this information to inform an implementation plan to facilitate widespread use and inform wider implementation of digital health interventions. METHODS: A multiple case study design within six early intervention in psychosis (EIP) services in England, will be used to test and refine theory-driven hypotheses about factors impacting on implementation of the Relatives' Education And Coping Toolkit (REACT). Qualitative data including behavioural observation, document analysis, and in-depth interviews collected in the first two EIP services (wave 1) and analysed using framework analysis, combined with quantitative data describing levels of use by staff and relatives and impact on relatives' distress and wellbeing, will be used to identify factors impacting on implementation. Consultation via stakeholder workshops with staff and relatives and co-facilitated by relatives in the research team will inform development of an implementation plan to address these factors, which will be evaluated and refined in the four subsequent EIP services in waves 2 and 3. Transferability of the implementation plan to non-participating services will be explored. DISCUSSION: Observation of implementation in a real world clinical setting, across carefully sampled services, in real time provides a unique opportunity to understand factors impacting on implementation likely to be generalizable to other web-based interventions, as well as informing further development of implementation theories. However, there are inherent challenges in investigating implementation without influencing the process under observation. We outline our strategies to ensure our design is transparent, flexible, and responsive to the timescales and activities happening within each service whilst also meeting the aims of the project. TRIAL REGISTRATION: ISCTRN 16267685 (09/03/2016).