Dataset Information

Digital Clinical Communication for Families and Caregivers of Children or Young People With Short- or Long-Term Conditions: Rapid Review.

ABSTRACT:

Background

The communication relationship between parents of children or young people with health conditions and health professionals is an important part of treatment, but it is unclear how far the use of digital clinical communication tools may affect this relationship.

Objective

The objective of our study was to describe, assess the feasibility of, and explore the impact of digital clinical communication between families or caregivers and health professionals.

Methods

We searched the literature using 5 electronic databases. We considered all types of study design published in the English language from January 2009 to August 2015. The population of interest included families and caregivers of children and young people aged less than 26 years with any type of health condition. The intervention was any technology permitting 2-way communication.

Results

We included 31 articles. The main designs were randomized controlled trials (RCTs; n=10), cross-sectional studies (n=9), pre- and postintervention uncontrolled (pre/post) studies (n=7), and qualitative interview studies (n=2); 6 had mixed-methods designs. In the majority of cases, we considered the quality rating to be fair. Many different types of health condition were represented. A breadth of digital communication tools were included: videoconferencing or videoconsultation (n=14), and Web messaging or emails (n=12). Health care professionals were mainly therapists or cognitive behavioral therapists (n=10), physicians (n=8), and nurses (n=6). Studies were very heterogeneous in terms of outcomes. Interventions were mainly evaluated using satisfaction or acceptance, or outcomes relating to feasibility. Clinical outcomes were rarely used. The RCTs showed that digital clinical communication had no impact in comparison with standard care. Uncontrolled pre/post studies showed good rates of satisfaction or acceptance. Some economic studies suggested that digital clinical communication may save costs.

Conclusions

This rapid review showed an emerging body of literature on the use of digital clinical communication to improve families' and caregivers' involvement in the health management of children or young people. Further research with appropriate study designs and longer-term outcome measures should be encouraged.

Trial registration

PROSPERO CRD42016035467; http://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD 42016 035467(Archived by WebCite at http://www.webcitation.org/6vpgZU1FU).

SUBMITTER: Armoiry X

PROVIDER: S-EPMC5775486 | biostudies-literature | 2018 Jan

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Digital Clinical Communication for Families and Caregivers of Children or Young People With Short- or Long-Term Conditions: Rapid Review.

Armoiry Xavier X Sturt Jackie J Phelps Emma Elizabeth EE Walker Clare-Louise CL Court Rachel R Taggart Frances F Sutcliffe Paul P Griffiths Frances F Atherton Helen H

Journal of medical Internet research 20180105 1

<h4>Background</h4>The communication relationship between parents of children or young people with health conditions and health professionals is an important part of treatment, but it is unclear how far the use of digital clinical communication tools may affect this relationship.<h4>Objective</h4>The objective of our study was to describe, assess the feasibility of, and explore the impact of digital clinical communication between families or caregivers and health professionals.<h4>Methods</h4>We ...[more]

PMID: 29305339

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Project description:BackgroundSince the introduction of digital health technologies in National Health Service (NHS), health professionals are starting to use email, text, and other digital methods to consult with their patients in a timely manner. There is lack of evidence regarding the economic impact of digital consulting in the United Kingdom (UK) NHS.ObjectiveThis study aimed to estimate the direct costs associated with digital consulting as an adjunct to routine care at 18 clinics serving young people aged 16-24 years with long-term conditions.MethodsThis study uses both quantitative and qualitative approaches. Semistructured interviews were conducted with 173 clinical team members on the impacts of digital consulting. A structured questionnaire was developed and used for 115 health professionals across 12 health conditions at 18 sites in the United Kingdom to collect data on time and other resources used for digital consulting. A follow-up semistructured interview was conducted with a single senior clinician at each site to clarify the mechanisms through which digital consulting use might lead to outcomes relevant to economic evaluation. We used the two-part model to see the association between the time spent on digital consulting and the job role of staff, type of clinic, and the average length of the working hours using digital consulting.ResultsWhen estimated using the two-part model, consultants spent less time on digital consulting compared with nurses (95.48 minutes; P<.001), physiotherapists (55.3 minutes; P<.001), and psychologists (31.67 minutes; P<.001). Part-time staff spent less time using digital consulting than full-time staff despite insignificant result (P=.15). Time spent on digital consulting differed across sites, and no clear pattern in using digital consulting was found. Health professionals qualitatively identified the following 4 potential economic impacts for the NHS: decreasing adverse events, improving patient well-being, decreasing wait lists, and staff workload. We did not find evidence to suggest that the clinical condition was associated with digital consulting use.ConclusionsNurses and physiotherapists were the greatest users of digital consulting. Teams appear to use an efficient triage system with the most expensive members digitally consulting less than lower-paid team members. Staff report showed concerns regarding time spent digitally consulting, which implies that direct costs increase. There remain considerable gaps in evidence related to cost-effectiveness of digital consulting, but this study has highlighted important cost-related outcomes for assessment in future cost-effectiveness trials of digital consulting.

Project description:BackgroundYoung people are disproportionately more likely than other age groups to use substances. The rise in substance use and related harms, including overdose, during the Covid-19 pandemic has created a critical need for more innovative and accessible substance use interventions. Digital interventions have shown effectiveness and can provide more engaging, less stigmatizing, and accessible interventions that meet the needs of young people. This review provides an overview of recent literature on the nature of recently published digital interventions for young people in terms of technologies used, substances targeted, intended outcomes and theoretical or therapeutic models employed.MethodsRapid review methodology was used to identify and assess the literature on digital interventions for young people. An initial keyword search was conducted using MEDLINE the Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects (DARE), Health Technology Assessment Database (HTA) and PROSPERO for the years 2015-2020, and later updated to December 2021. Following a title/abstract and full-text screening of articles, and consensus decision on study inclusion, the data extraction process proceeded using an extraction grid developed for the study. Data synthesis relied on an adapted conceptual framework by Stockings, et al. that involved a three-level treatment spectrum for youth substance use (prevention, early intervention, and treatment) for any type of substance.ResultsIn total, the review identified 43 articles describing 39 different digital interventions. Most were early interventions (n = 28), followed by prevention interventions (n = 6) and treatment interventions (n = 5). The identified digital technologies included web-based (n = 14), game-based (n = 10), mobile-based (n = 7), and computer-based (n = 5) technologies, and virtual reality (n = 3). Most interventions targeted alcohol use (n = 20) followed by tobacco/nicotine (n = 5), cannabis (n = 2), opioids (n = 2), ketamine (1) and multiple, or any substances (n = 9). Most interventions used a personalized or normative feedback approach and aimed to effect behaviour change as the intended outcome. Interestingly, a harm reduction approach guided only one of the 39 interventions.ConclusionsWhile web-based interventions represented the most common type of technology, more recently developed immersive and interactive technologies such as virtual reality and game-based interventions call for further exploration. Digital interventions focused mainly on alcohol use, reflecting less concern for tobacco, cannabis, co-occurring substance use, and illicit drug use. Specifically, the recent exacerbation in the opioid crisis throughout North American underlines the urgent need for more prevention-oriented digital interventions for opioid use. The uptake of digital interventions among youth also depends on the incorporation of harm reduction approaches.

Project description:BackgroundComorbid 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.MethodsA 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).ResultsFourteen 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.ConclusionsThere 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 contributionSeven 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.

Project description:BACKGROUND:Mobile apps for mobile phones and tablet devices are widely used by children and young people aged 0-18 years with long-term health conditions, such as chronic kidney disease (CKD), and their healthy peers for social networking or gaming. They are also poised to become a major source of health guidance. However, app development processes that are coproduced, rigorously developed, and evaluated to provide tailored, condition-specific, practical advice on day-to-day care management are seldom systematic or sufficiently described to enable replication. Furthermore, attempts to extrapolate to the real world are hampered by a poor understanding of the effects of key elements of app components. Therefore, effective and cost-effective novel, digital apps that will effectively and safely support care management are critical and timely. To inform development of such an app for children with CKD, a user requirements-gathering exercise was first needed. OBJECTIVE:To explore the views of children with CKD, their parents, and health care professionals to inform future development of a child-focused, care-management app. METHODS:Using age- and developmentally appropriate methods, we interviewed 36 participants: 5-10-year-olds (n=6), 11-14-year-olds (n=6), 15-18-year-olds (n=5), mothers (n=10), fathers (n=2), and health care professionals (n=7). Data were analyzed using Framework Analysis and behavior change theories. RESULTS:Of the 27 interviews, 19 (70%) interviews were individual and 8 (30%) were joint-5 out of 8 (63%) joint interviews were with a child or young person and their parent, 1 out of 8 (13%) were with a child and both parents, and 2 out of 8 (25%) were with 2 professionals. Three key themes emerged to inform development of a software requirement specification for a future home-based, digital care-management app intervention: (1) Gaps in current online information and support, (2) Difficulties experienced by children with a long-term condition, and (3) Suggestions for a digital care-management app. Reported gaps included the fact that current online information is not usually appropriate for children as it is "dry" and "boring," could be "scary," and was either hard to understand or not relevant to individuals' circumstances. For children, searching online was much less accessible than using a professional-endorsed mobile app. Children also reported difficulty explaining their condition to others, maintaining treatment adherence, coping with feeling isolated, and with trying to live a "normal" life. There was recognition that a developmentally appropriate, CKD-specific app could support the process of explaining the condition to healthy peers, reducing isolation, adhering to care-management plans, and living a "normal" life. Participants recommended a range of media and content to include in a tailored, interactive, age- and developmentally appropriate app. For example, the user would be able to enter their age and diagnosis so that only age-appropriate and condition-specific content is displayed. CONCLUSIONS:Future development of a digital app that meets the identified information and support needs and preferences of children with CKD will maximize its utility, thereby augmenting CKD caregiving and optimizing outcomes.

Project description:ObjectiveThis scoping review aimed to bring together and identify digital tools that support people with one or more long-term conditions to maintain physical activity and describe their components and theoretical underpinnings.MethodsSearches were conducted in Cumulative Index to Nursing and Allied Health Literature, Medline, EMBASE, IEEE Xplore, PsycINFO, Scopus, Google Scholar and clinical trial databases, for studies published between 2009 and 2019, across a range of long-term conditions. Screening and data extraction was undertaken by two independent reviewers and the Preferred Reporting Items for Scoping Reviews guidelines informed the review's conduct and reporting.ResultsA total of 38 results were identified from 34 studies, with the majority randomised controlled trials or protocols, with cardiovascular disease, type 2 diabetes mellitus and obesity the most common long-term conditions. Comorbidities were reported in >50% of studies but did not clearly inform intervention development. Most digital tools were web-browser-based ± wearables/trackers, telerehabilitation tools or gaming devices/components. Mobile device applications and combination short message service/activity trackers/wearables were also identified. Most interventions were supported by a facilitator, often for goal setting/feedback and/or monitoring. Physical activity maintenance outcomes were mostly reported at 9 months or 3 months post-intervention, while theoretical underpinnings were commonly social cognitive theory, the transtheoretical model and the theory of planned behaviour.ConclusionsThis review mapped the literature on a wide range of digital tools and long-term conditions. It identified the increasing use of digital tools, in combination with human support, to help people with long-term conditions, to maintain physical activity, commonly for under a year post-intervention. Clear gaps were the lack of digital tools for multimorbid long-term conditions, longer-term follow-ups, understanding participant's experiences and informs future questions around effectiveness.

Project description:BACKGROUND:For young people with long-term conditions, transition from child to adult-oriented health services is a critical period which, if not managed well, may lead to poor outcomes. There are features of transition services which guidance and research suggest improve outcomes. We studied nine such features, calling them 'proposed beneficial features': age-banded clinic; meet adult team before transfer; promotion of health self-efficacy; written transition plan; appropriate parent involvement; key worker; coordinated team; holistic life-skills training; transition manager for clinical team. We aimed to describe the extent to which service providers offer these nine features, and to compare this with young people's reported experience of them. METHODS:A longitudinal, mixed methods study followed 374 young people as their care moved from child to adult health services. Participants had type 1 diabetes, cerebral palsy or autism spectrum disorder with additional mental health difficulties. Data are reported from the first two visits, one year apart. RESULTS:Three hundred four (81.3%) of the young people took part in the second visit (128 with diabetes, 91 with autism, 85 with cerebral palsy). Overall, the nine proposed beneficial features of transition services were poorly provided. Fewer than half of services stated they provided an age-banded clinic, written transition plan, transition manager for clinical team, a protocol for promotion of health self-efficacy, or holistic life-skills training. To varying degrees, young people reported that they had not experienced the features which services said they provided. For instance, the agreement for written transition plan, holistic life-skills training and key worker, was 30, 43 and 49% respectively. Agreement was better for appropriate parent involvement, age-banded clinic, promotion of health self-efficacy and coordinated team at 77, 77, 80 and 69% respectively. Variation in the meaning of the features as experienced by young people and families was evident from qualitative interviews and observations. CONCLUSIONS:UK services provide only some of the nine proposed beneficial features for supporting healthcare transition of young people with long term conditions. Observational studies or trials which examine the influence of features of transition services on outcomes should ensure that the experiences of young people and families are captured, and not rely on service specifications.

Dataset Information

Digital Clinical Communication for Families and Caregivers of Children or Young People With Short- or Long-Term Conditions: Rapid Review.

Background

Objective

Methods

Results

Conclusions

Trial registration

Publications

Digital Clinical Communication for Families and Caregivers of Children or Young People With Short- or Long-Term Conditions: Rapid Review.

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