Digital health refers to the use of digital technology to manage and improve health (1,2). Digital health includes telehealth, telemedicine, virtual medicine, mobile health (mHealth), information technology associated with healthcare, wearable devices, and emerging technologies. Digital health is delivered through many platforms, applications, websites, and sensors, and may utilize artificial intelligence and virtual or augmented reality (1).

Pediatric rheumatic diseases (PRD) are a class of chronic systemic inflammatory disorders that include an array of musculoskeletal and connective tissue disorders, with juvenile idiopathic arthritis (JIA) being the most common (3). PRD can have adverse effects on growth and development, quality of life, academic performance, mental health, and transitioning to adult health care (4).

Digital health holds particular promise for improving both health outcomes and quality of life for young people and families affected by PRD through the use of technologies that provide reassurance and enhanced ability to self-manage diseases (5). Access to digital health resources can contribute to enhancing disease education and management, connections with patient and parent support groups, fostering alliances with advocacy and educational associations, and use of digital communication methods with health care providers (6,7). Promoting and facilitating digital health literacy among children and families affected by having a PRD can help navigate and manage the complexities of their conditions.

To utilize and benefit from digital health, users must have a prerequisite level of digital health literacy (DHL) (8–10). DHL is a set of skills that allows digital health users to seek, access, appraise, utilize, and integrate health information beneficially into their daily routines, communicate about health, and gain benefit from apps and digital services (8–10). Higher DHL aids in accessing, finding, and understanding health information, navigating the complexities of the healthcare system, interpreting disease status, monitoring treatments, and having electronic communication with health care providers (4,11,12). This results in better disease management in children and adolescents with chronic childhood diseases, including PRDs, and their primary caregivers (4,10–12). Conversely, low DHL is associated with poor health outcomes and the amplification of pre-existing health and social disparities (7,9,13). Low DHL can lead to barriers in access to care, less benefit from treatments, poorer outcomes, fear of disruption in care, increased isolation, inability to find reliable health information, and confusion about the integrity of online health information (7,9,13).

Digital health can provide more efficient, timely, cost-effective, and convenient health care services, allowing people to have greater access to health-related services and personal health data that has previously been unaffordable and unavailable (1,9,14). Digital health has the potential to address and correct healthcare inequalities based on gender, disabilities, living in rural and remote settings, and mental health issues (1,14,15). Specific to PRD, digital health can provide a solution to the inadequate access to pediatric rheumatologists and avoid travel to and from pediatric rheumatic services that are increasingly being centralized at children’s hospitals (4). Furthermore, the increased uptake and migration to digital health was greatly accentuated by the COVID-19 pandemic (6,7,13). In fact, the COVID-19 pandemic caused an “infodemic” of health information that varied in its validity and spread “faster than the coronavirus itself” (7). Thus, DHL has been described as the “social vaccine” for the infodemic (9).

Methodology

This protocol was written as per the JBI ScR framework (30) and in accordance with PRISMA-ScR guidelines (31). This protocol was registered with the Open Science Framework (https://osf.io/g4jbh/). This scoping review (ScR) protocol incorporates the application Covidence (32), a browser-based tool that streamlines the review process, allowing researchers conducting systematic reviews to effectively collaborate and efficiently organize, screen, and extract data from studies. Covidence complies with Preferred Reporting Items for Systematic Review and Meta-Analysis extension for scoping reviews (PRISMA-ScR), can assess risk of bias in individual studies, and can present real-time statistics comparing approval and denial rates among reviewers. NVivo qualitative data software (33) will be used to manage and analyze data. NVivo is a tool that allows researchers to collaborate in the extraction, organization, and coding of both qualitative and quantitative data, including text, video, audio, pictures, graphs, charts, mind maps, and any other non-numerical data formats.

Table 1 shows the population, concept, and context (30) used to develop the research questions used in this proposal. Facilitators are defined as any personal, population-level, or systemic factors that develop or promote an individual’s DHL. Conversely, barriers are personal, population-level, or systemic factors that delay or weaken an individual’s DHL.

Primary caregivers are defined as a person or people who chiefly care for the child or adolescent with PRD in their home. This includes helping with daily tasks, providing necessities, and participating day-to-day in actively managing the child’s or adolescent’s PRD. This is traditionally the parental role, although other individuals may fulfill this role, regardless of biological relationship and traditional roles.

Identify relevant studies

The electronic databases to be searched include MEDLINE, CINAHL, Embase, Web of Science, and ProQuest Dissertations & Theses Global. The search terms were developed by a librarian (MC) and experts in the subject area (AR, JS, DE, and CE) and piloted through a search of MEDLINE. Prior to finalizing the search terms for this protocol, the draft search terms underwent a review by an independent librarian experienced with systematic reviews, using the Peer Review of Electronic Search Strategies (PRESS) guidelines (34). The feedback from the PRESS review was incorporated into the search strategy, which is presented in Table 2.

The search utilizes both medical subject headings (MeSH) and keyword searches, combined using the Boolean terms “AND”, “OR”, and “NOT”. The search strategy involves three parts: 1. identifying studies focusing on DHL, using the many synonyms and associated terms; 2. identifying studies focusing on rheumatic conditions, both general and pediatric specific; and 3. identifying studies that focus on children, adolescents, and primary caregivers. These three parts will then be combined for the results that are specific to the facilitators of and barriers to DHL in children or adolescents with PRD and their primary caregivers.

As the search progresses and moves to additional databases, the search strategy will be updated, if necessary, to best address the objective and research questions. Reference lists of the included studies will be hand searched for any applicable articles that were not previously captured.

Inclusion Criteria

This ScR protocol will capture published studies meeting the following requirements:

• All qualitative, quantitative, and mixed methods study designs from any discipline of healthcare or clinical setting; systematic reviews that meet the inclusion criteria will also be considered,
• The study’s target population is children (aged 0 to 9 years) and/or adolescents (aged 10 to 19 years) with PRD or primary caregivers of children/adolescents with PRD,
• English language full text, and
• Articles published since January 1, 1974, which is the year that the term health literacy was first used (35).

Exclusion Criteria

This ScR protocol will exclude the following:

• Opinion papers, conference proceedings, and editorials,
• Grey literature,
• Studies from complementary and alternative health fields (as examples: chiropractic, naturopathic, and acupuncturist),
• Articles with full text published in a language other than English, and Full-text articles that cannot be accessed either digitally or paper-based.

Selection Process

Articles identified by the search strategy defined in this protocol will be imported into Covidence (32) and duplicates will be removed. Two reviewers who will be conducting the article screening will trial the a priori inclusion and exclusion criteria for 20 articles, to finalize these criteria and minimize selection bias (36). Following this, titles and abstracts will be screened for inclusion; a full-text screen will be completed if the article’s eligibility cannot be determined through the title and abstract. Any disagreements in eligibility will be resolved through a third reviewer. This decision process and the results of the search will be documented in a PRISMA-ScR flow diagram (31,37) (Figure 1).

Quality Appraisal

All studies included after the full-text review in the ScR will be analyzed with the Mixed Methods Appraisal Tool (MMAT) (38). The MMAT allows researchers to critically appraise studies that are qualitative and randomized controlled trials, nonrandomized, descriptive, and mixed methods studies, but not reviews articles. The tool consists of a checklist where negative responses are used to guide a more thorough review; researchers are discouraged from calculating an overall score for each study. If studies are discovered to be of low-quality, researchers are advised not to exclude them from the results. Rather, researchers are encouraged to contrast the quality of the study with the results, discussing the reasoning and implications of for the low-quality rating (38). Two reviewers will conduct independent analyses of the included studies identified through the application of this protocol using the MMAT.

Charting the Data

A data extraction tool based on the JBI extraction instrument template (30) (Table 3) will be developed using an Microsoft Excel spreadsheet (39). The tool will be trialed by the two reviewers The tool may be updated iteratively as the ScR progresses. Data from studies that have passed the screening process will be extracted as per the tool, which will be trialed for five articles by two reviewers prior to acceptance. Once accepted, both reviewers will independently proceed with the data extraction from the included studies.

Collating, summarizing, and reporting the results

For the qualitative component of this scoping review protocol, included studies will be analyzed to identify and synthesize key themes, patterns, and insights from the included studies. textual data will be entered into NVivo (33), which will assist in the organization and coding of nodes, folders and themes, as well as in the exploration of relationships and patterns using NVivo’s query and visualization tools. A coding tree will be developed through NVivo (40). A narrative summary will accompany any tabulated or charted results and will describe how the results relate to the review’s objective and questions.

Following data extraction, qualitative findings from various studies will be systematically organized, and recurrent themes will be identified. Themes will be analyzed to discern commonalities, variations, and nuanced perspectives across the qualitative studies. This process will facilitate a comprehensive understanding of the qualitative evidence regarding the research question. Knowledge gaps identified in the literature found through application of this protocol will also be presented. Quantitative data extracted from eligible studies will be synthesized, including frequencies, means, and measures of association. An integrated approach to data analysis will be used for mixed methods studies, in which qualitative and quantitative findings will be analyzed separately and then integrated to provide a holistic understanding.

Synthesis across methodologies

Following the individual analyses of qualitative, quantitative, and mixed methods studies, an overarching synthesis will be conducted to integrate findings across studies. Overarching themes, patterns and trend that emerge from the collective body of evidence will be identified. This will be accomplished through coding of results across methodologies into larger themes, when appropriate. Whenever possible, data will be presented in graphical or tabular from, to aid in understanding the research question, study participant and PRD specifics, facilitators of and barriers to DHL, and outcomes of participants with more facilitators to or barriers of DHL. Any statistical analyses will be limited to descriptive statistics and not result in a synthesis of the results or outcomes (30). The synthesis will provide a comprehensive and nuanced understanding of the barriers and facilitator to DHL in children and adolescents with PRD.