A Systematic Review of Behavioral Intervention Technologies for Youth With Chronic Health Conditions and Physical and Intellectual Disabilities: Implications for Adolescents and Young Adults With Spina Bifida

Abstract

Objective Behavioral intervention technologies (BITs) stand as a promising delivery mechanism that overcomes multiple condition-specific and access barriers for self-management interventions for adolescents and young adults with spina bifida (AYA-SB). The purpose of the current review was to synthesize the behavioral and self-management intervention literature in conditions that have overlapping symptoms with youth with SB and to develop a model of likely user needs for AYA-SB that promotes self-management. Method The search strategy was conducted by a medical research librarian in the following databases: MEDLINE (Ovid), EMBASE (Elsevier), PsycINFO (EbscoHost), the Cochrane Library (Wiley), and Web of Science (Thomson Reuters) databases. The review was based on a systematic narrative synthesis framework and adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (registration number CRD42018092342). Results In total, 18 articles were included in the current BIT review. The majority of included studies (1) targeted the management of chronic health conditions, (2) were informed by evidence-based approaches, (3) relied on content delivery, (4) were Web-based, (5) used linear or user-driven workflows, (6) included professional human support, and (7) included a control condition. Conclusions Many of the evaluated BITs resulted in acceptable usage and maintained or improved targeted symptoms. A user needs model for AYA-SB is proposed with the intention that future research will promote further refinement and ultimate deployment of a BIT for AYA-SB to promote self-management.

Exploring an Existing Weight Management App for Use With Adolescents and Young Adults With Spina Bifida: Usability Study

“…The evaluated elements of My Diet Coach involved active, text-based data entry. Consistent with the literature on AYAs with similar symptom profiles [16], the AYA-SB participants reported that these elements could be improved for their use by having tutorials, being simpler, and having less logging options. Possibly because of the lack of such features and/or the executive functioning problems associated with SB [23], participants also displayed several errors for a relatively simple data entry path.…”

“…Although the current findings suggest that My Diet Coach is learnable for AYA-SBs, it also implicates personalizing existing elements and characteristics for AYA-SBs and related users (eg, youth with physical and/or motor disabilities) [16]. The evaluated elements of My Diet Coach involved active, text-based data entry.…”

“…A user needs model for AYA-SBs was recently created for BITs aiming to improve self-management [16]. This user needs model was framed within the BIT model, which includes conceptual ( why the BIT is needed and how it may achieve such aims) and technical ( what is delivered to BIT users and how and when the delivery may occur) aspects for designing and deploying BITs [49].…”

“…For example, AYA-SBs are unique in that they have symptoms that overlap with chronic medical conditions and physical and intellectual disabilities. For this reason, a user needs model for BITs that support self-management in SB has been created [16]. The model includes (1) behavioral skills– and evidence-based change strategies that avoid abstract concepts and help to categorize behavior, (2) elements that are multisensory (eg, text and audio) and use multiple methods (eg, visualizations and passive data collection), (3) being capable of being used across multiple platforms, (4) linear and user-driven workflows, and (5) expert and/or peer support.…”

“…We hypothesized that, in evaluating an app rated as having high quality for typically developing populations [18], the majority of users would be able to complete tasks and do so in 5 min or less by their second attempt of a task [19,20]. However, given the variable symptom and functioning profile of AYA-SBs [16], it was anticipated that high variability across the sample would be observed for all evaluated usability metrics.…”