JMIR Publications

ABSTRACT

Background:

The rapid advancement of digital health technologies (DHTs) offers substantial potential for improving healthcare access, yet it simultaneously risks exacerbating existing inequities for marginalized populations. Previous research on the digital divide has often treated individuals with blindness as a homogenous group, primarily focusing on barriers related to digital access and skills. However, less is known about the nuanced experiences of specific subgroups, such as educated and digitally literate young adults. This study focuses on this demographic to understand how their advanced digital capabilities interact with systemic and infrastructural barriers in healthcare.

Objective:

This qualitative study aimed to explore the lived healthcare experiences of educated young adults with blindness in China, specifically identifying how DHTs simultaneously contribute to their empowerment and exclusion.

Methods:

Eligible participants were educated young adults with blindness in China (aged 18-30 years, Mandarin speakers, smartphone users, and holding or pursuing higher education). A total of 12 semi-structured interviews were conducted in Mandarin during September 2024. All interviews were audio-recorded and transcribed verbatim. An inductive thematic analysis was employed to interpret the data and identify key themes.

Results:

Participants’ experiences highlighted an “empowered but excluded” dynamic. Seven key themes emerged, categorized into empowerment and exclusion. Empowerment themes included: (1) digital platforms empowering self-management and healthcare access, where DHTs enabled independent appointment booking and access to comprehensive health information; and (2) digital platforms empowering for finding medical visit companions, facilitating the discovery of companions for physical and emotional support. Exclusion themes comprised: (3) inaccessible online appointment systems, due to non-inclusive designs; (4) inaccessible healthcare environments and information formats, stemming from non-accessible self-service machines and written materials; (5) lack of provider competencies in respecting patient autonomy, as providers often assumed digital incompetence; (6) data privacy and security concerns, heightened by increased digitalization and reliance on assistive tools; and (7) challenges related to the quality and consistency of online companion support, highlighting the limitations of platform-based assistance.

Conclusions:

Our findings reveal an “empowered but excluded” dynamic: the potential for digital empowerment and enhanced independence is often curtailed by systematic barriers. Addressing this necessitates a multifaceted approach: enhancing technological accessibility through robust standards adherence and inclusive co-design processes; improving healthcare provider competencies in patient-centered care via targeted training; and empowering educated young blind adults by building their capacity for self-determination to achieve equitable healthcare access.