JMIR Publications

ABSTRACT

Background:

The use of eHealth is more challenging people with intellectual disabilities (ID) than for the general population, because the technologies often do not fit the complex needs and living circumstances of people with ID. A translational gap therefor exists between the developed technology and the users’ needs and capabilities. User involvement approaches have been developed to overcome this mismatch during the design, development, and implementation process of the technology, and the effectiveness and the usages of eHealth have received a lot of scholarly attention, but little is known about user involvement approaches.

Objective:

In this scoping review, we aimed to identify inclusive approaches currently used for the design, development, and implementation of eHealth for people with ID. In addition, we reviewed how and in what phase(s) people with ID and other stakeholders are included in these processes. We used nine domains identified from the CeHRes roadmap and the Non-adoption, Abandonment, and challenges to the Scale-up, Spread, and Sustainability (NASSS) framework to gain insight into these processes.

Methods:

We identified both scientific and grey literature through systematic searches in PubMed, Embase, PsychInfo, CINAHL, Cochrane, Web of Science, Google Scholar, and (websites of) relevant intermediate (healthcare) organizations. We included studies published since 1995 that showed the design, development, and/or implementation process of eHealth for people with ID. Data were analyzed along nine domains: 1) participatory development, 2) iterative process, 3) value specification, 4) value proposition, 5) technological development and design, 6) organization, 7) external context, 8) implementation, and 9) evaluation.

Results:

The search strategy resulted in 10,639 studies, of which 17 matched the inclusion criteria. Various approaches were used to guide user involvement (e.g., human/user-centered design and participatory development), most of which applied an iterative process mainly during technological development. The involvement of stakeholders other than end users was described less. The literature focused on the application of eHealth on an individual level and did not take the organizational context into account. Inclusive approaches in the design and development phases were well described, but the implementation phase remained underexposed.

Conclusions:

The participatory development, iterative process and technological development and design domains showed inclusive approaches applied at the start and during development, as opposed to at the end of the process and during implementation. The literature focused primarily on individual use of the technology, and the external, organizational, and financial contextual preconditions received less attention. However, members of this target group rely on their (social) environment for care and support. Therefore, more attention is needed for these underrepresented domains and key stakeholders should be included further on in the process in order to reduce the translational gap that exists between the developed technologies and user needs, capabilities, and context.