We used a qualitative design to gain an in-depth understanding of how educated and digitally literate young adults with blindness navigate health care access with the assistance of DHTs. This approach was chosen to capture the rich, subjective lived experiences and perceptions of participants, offering deep insights into how they interpret their personal encounters, construct their realities, and attribute meaning to their experiences within a rapidly digitizing health care ecosystem [25]. A qualitative methodology is particularly appropriate for exploring complex social phenomena where individual perspectives are central to uncovering the underlying dynamics of empowerment and exclusion. This study adheres to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines (Checklist 1) [26].

Semistructured interviews were conducted in Mandarin Chinese during September 2024 by 1 author (JZ), a female PhD student trained in qualitative research methods. The interviewer had no prior relationship with the participants, which helped minimize biases and address potential ethical concerns. All interviews were carried out remotely using the Tencent Meeting (Tencent Technology Co Ltd) videoconferencing platform. Tencent Meeting was selected due to the necessity for remote data collection during the COVID-19 outbreak and its status as a mainstream, accessible, and free online conferencing tool widely used in mainland China [28,29]. This ensured both the safety of participants and researchers and provided a familiar and convenient platform for our digitally literate participants with blindness. Before the interviews, participants were provided with detailed information about the study’s purpose, procedures, and the expected time commitment.

A topic guide with open-ended questions (Multimedia Appendix 1) was used during interviews to ensure comprehensive coverage of relevant topics and allow participants to freely elaborate on their experiences. Follow-up questions were posed as needed to clarify responses and gather more detailed information on participants’ perspectives. The interview questions were developed by reviewing the existing literature and absorbing expert opinions. To ensure validity, the guide was pretested by 2 educated adults with blindness (who were not included in the final sample) and revised based on their feedback. Participants were initially asked to share their personal background and how they became blind. Subsequently, they were prompted to describe their past and present experiences in accessing health care services, while the third part focused on the perceived benefits and challenges of using digital tools, including how such technologies empowered or hindered their access to health care. Follow-up questions were tailored to participants’ responses to encourage deeper elaboration. Finally, participants were invited to share any additional thoughts or address overlooked aspects before concluding the interview. The interviewer took field notes during the interviews to supplement the data and highlight key moments [30]. A total of 12 interviews were conducted, with durations ranging from 35 to 90 minutes (mean 55.0, SD 18.5). All interviews were audio-recorded with participants’ permission, transcribed verbatim, and checked by participants.

This study received ethical approval from the Peking University Institutional Review Board (IRB00001052-22097). Due to the participants’ blindness, a verbal informed consent process was meticulously followed. Before each interview, participants were thoroughly informed about the study’s purpose, procedures, their right to withdraw at any time without penalty, the voluntary nature of their participation, and the measures taken to ensure confidentiality. Oral consent was obtained after ensuring that participants fully understood all aspects of the study, and this consent was audio-recorded as part of the interview. To protect the privacy and confidentiality of participants, strict measures were implemented. All data collected, including interview transcripts and audio recordings, were anonymized immediately upon transcription by removing direct identifiers such as names, specific locations, or any other potentially identifying information. Pseudonyms were assigned to participants to ensure their anonymity in all research outputs. All data were stored securely on password-protected university servers accessible only to the research team. Participants received compensation ranging from 60 to 100 RMB (US $8.40 to $14.00) for their time and participation. We confirm that no images or other materials that could identify individual participants are included in this paper or any supplementary materials. All procedures involving human subjects were conducted in accordance with the ethical standards of the institutional and national research committee and with the Helsinki Declaration.

This study used thematic analysis, a flexible and powerful method for systematically generating robust findings by “identifying, analyzing, and reporting patterns (themes) within data” [31]. Following the inductive qualitative thematic analysis approach outlined by Braun and Clarke [31,32], our data analysis encompassed 3 phases: reading, coding, and theming, informed by practical thematic analysis guidelines [33].

The reading phase commenced with the transcription of recorded interviews by 1 author (JZ), which were subsequently verified by the participants. The translated interview transcripts were then imported into the qualitative data analysis software MAXQDA 24 (VERBI GmbH) to facilitate the analytical process. During this phase, the researchers achieved extensive familiarization with the data through repeated readings.

The coding phase began with initial code development and involved a systematic and iterative process. One researcher (JZ) initiated the process by assigning descriptive codes line-by-line to segments of the interview transcripts using MAXQDA 24. These codes were generated inductively, emerging organically from a close reading of the text. They represented specific concepts, ideas, or experiences directly relevant to the study’s objectives, aiming to capture the richness of participants’ perspectives in their own words. To ensure academic rigor and reliability, a second researcher (CS) independently analyzed 30% of the uncoded interview transcripts, generating her own list of key themes without any influence from JZ. After this blind coding process, the codes were discussed and compared among all authors. Code definitions were refined, and a shared codebook was developed. This iterative process involved reviewing and revising codes, merging similar concepts, and resolving discrepancies, ultimately ensuring a comprehensive and aligned approach to the remaining data [34].

The theming phase involved synthesizing these refined codes into broader, overarching themes that addressed the research questions [30,35]. Throughout the entire data analysis process, particular attention was paid to the concept of data saturation. Discussions regarding saturation began during the initial reading phase and continued iteratively throughout coding and theming to ensure that no new information was emerging and that the themes were well-developed and grounded in the data.

A total of 12 educated and digitally literate young participants with blindness were included in this qualitative study (Table 1). The average age was 25.4 (SD 2.2) years, more than half were female (7/12, 58%), and most experienced blindness from an early age (9/12, 75%; aged <6 y). Reflecting the inclusion criteria, all participants were currently pursuing or had completed higher education: 17% (2/12) held junior college degrees, while 83% (10/12) had completed or were pursuing Bachelor’s degrees or higher. In terms of occupation, 58% (7/12) were employed, with the remaining 42% (5/12) being students or unemployed. Half of the participants (6/12, 50%) resided in first-tier cities, with the remaining half evenly distributed between new first-tier or second-tier and third-tier or below cities (3/12, 25% each). The most common reasons for seeking health care were acute conditions and injury treatment (6/12, 50%), followed by chronic and skin conditions (4/12, 33%).

Participants’ experiences navigating health care in the digital age were rich and multifaceted, consistently revealing a complex dynamic of both empowerment and exclusion. Our thematic analysis yielded 7 key themes, which are presented under 2 overarching categories: empowerment (reflecting how digital technologies enhance autonomy and access), and exclusion (highlighting persistent barriers and unmet potentials in digital health care; Table 2).

To the best of our knowledge, this qualitative study is the first to specifically explore the health care experiences of educated and digitally literate young people with blindness in China within the context of the rapidly evolving digital health landscape. Our findings reveal an “empowered but excluded” dynamic, a paradox that vividly illustrates the lived reality of young people with blindness as a digitally native yet vulnerable generation. On one hand, participants demonstrated that DHTs and online platforms served as valuable tools, empowering them in self-managing their health conditions, proactively accessing health care information, and efficiently finding MVCs. On the other hand, this potential for digital empowerment and enhanced independence was significantly undermined by persistent and systemic barriers. These included reduced offline access to essential services, inaccessible digital and physical health care interfaces, a pervasive lack of provider competencies in respecting patients’ autonomy within a digital context, and heightened concerns regarding data privacy and security exacerbated by digital interactions.

Our findings corroborate existing literature on the empowering potential of DHTs for individuals with visual impairments. Participants’ ability to effectively use online platforms for appointment booking and to access a wealth of diverse and comprehensive health information aligns with previous research highlighting improved self-management and enhanced health literacy through digital tools [36-38]. The increased autonomy and freedom participants reported, stemming from their capacity to proactively seek information and support, resonates with the broader discourse on patient empowerment in the digital age [39-42]. This study extends these insights by specifically demonstrating how educated individuals with blindness, through their active engagement with screen reader technology and other digital tools, convert these opportunities into tangible benefits, challenging simplistic narratives of universal exclusion. The use of online patient communities and peer networks to fill gaps in formal medical guidance, particularly for those with acquired vision loss, further underscores the internet’s role as a crucial lifeline and a source of social support.

A distinctive contribution of this study is the exploration of digital platforms for finding MVCs. While the importance of companions for individuals with blindness in navigating health care is well-documented [43], the use of online platforms (such as Xianyu in China) to locate and coordinate such support represents an innovative, user-driven adaptation. This strategy allows for greater independence in arranging assistance, improving the overall health care–seeking experience, an area previously underexplored in digital health literature.

Despite the empowering potential of DHTs, our participants’ experiences reveal a profound exclusion shaped by persistent technological disaffordances, provider interactions that often disregard patient autonomy, and digital privacy concerns, which collectively hinder their independent and equitable health care engagement. Our findings align with prior research showing that many digital health platforms remain largely inaccessible to users with blindness and low vision [44,45]. This inaccessibility manifests in specific barriers, including websites that fail to meet accessibility standards, visual-centric data displays, and complex interfaces that do not accommodate screen readers or alternative input methods [45-47]. These limitations are not just technical oversights but reflect a broader systemic neglect of the needs of people with disabilities in the design and development process.

Furthermore, our study highlights how the interaction between digital and nondigital environments can amplify existing inequalities. Beyond technological inaccessibility, participants frequently encountered health care providers who failed to recognize and respect their autonomy. This finding is consistent with previous research which shows that health care providers may hold stereotypes or paternalistic assumptions about persons who are blind, leading to exclusionary communication practices and undermining patient-centered care [43,48]. Our study adds to this discourse by illustrating how relational autonomy—a framework that emphasizes the importance of direct, respectful communication and the clinician-patient relationship as central to support patients’ identities and capabilities [49-51]. When providers fail to engage patients with blindness as active participants in their care, it not only erodes trust but also reinforces structural inequities [50,52].

Finally, our findings align with previous research showing that digital privacy poses unique challenges for users with blindness, extending beyond standard concerns about data breaches. When using visual assistance technologies or sharing sensitive data, they may be unable to independently verify what information is being disclosed [53,54]. This complexity of privacy for users with blindness is tightly interwoven with issues of accessibility, autonomy, and trust. Our study’s contribution lies in showing the compounded effect of these factors on young individuals with blindness in China, revealing that digital empowerment is fragile and easily overridden by systematic barriers within the health care environment.

To address the systematic barriers identified in this study and improve the health care experiences of young people with blindness, we propose the following feasible policy and practical implications.

First, developers and policymakers must enforce adherence to established accessibility standards. For web-based platforms, this includes the Web Content Accessibility Guidelines [55]. However, as health care services increasingly migrate to mobile apps, it is equally critical to incorporate mobile-specific accessibility guidelines, such as Apple’s Human Interface Guidelines for accessibility [56]. Research shows that compliance is often partial; therefore, involving users with disabilities directly in a co-design process is critical for identifying specific needs, such as intuitive navigation, accessible onboarding, and the use of clear language [57].

Second, medical education and professional training must be enhanced. Evidence shows that structured communication skills training improves health care professionals’ self-efficacy and performance, leading to more effective and empathetic patient interactions. To address the biases reported by our participants, these training programs must include strategies to help providers recognize and mitigate unconscious bias related to disability, incorporating the perspectives of marginalized patient groups into the training design [58-60].

Thirdly, robust and accessible privacy controls are needed. Individuals with blindness require privacy information and controls that are both accessible and understandable, emphasizing the need for clear, multi-modal communication and cross-platform compatibility in privacy tools. The development and implementation of accessible authentication methods, such as Braille passwords or universally usable verification tools, should be prioritized.

Finally, it is crucial to empower young individuals with blindness by building their capacity for self-determination. Organizations led by and for individuals with blindness play a pivotal role in this process by equipping them with self-advocacy and daily living skills [61]. In the Chinese context, while organizations like the China Disabled Persons’ Federation provide foundational services [62], nongovernmental organizations such as the Golden Cane, the Beijing Hongdandan Cultural Service Center, and the One Plus One Disability Charity Group are vital in promoting rights advocacy and independent living skills [63-65]. A notable gap remains in dedicated health care navigation training programs that integrate digital literacy for e-health services. Closing this gap is essential to ensure young blind individuals in China can fully leverage digital health advancements.

This study’s primary strength lies in its novel contribution to understanding the health care experiences of a previously overlooked subgroup: young, educated individuals with blindness in China. By focusing on this specific demographic, our research offers three key contributions. First, it challenges the homogeneous view of vulnerable groups by demonstrating that high-literacy individuals possess unique capabilities and face distinct challenges within the digital ecosystem. Second, it introduces and evidences the “empowered but excluded” paradox, providing a nuanced theoretical framework that moves beyond a simple narrative of digital exclusion. It shows that empowerment and exclusion are not mutually exclusive but coexist, shaped by the interplay between individual agency and systemic barriers. Third, this framework helps distinguish which challenges can be mitigated through individual effort and digital literacy versus those that require fundamental changes in policy, technology design, and clinical practice. The qualitative depth provides rich, contextualized insights that explain how and why these dynamics manifest, laying the groundwork for tailored interventions.

This study has several limitations. As a qualitative study, the findings are based on a small sample of 12 educated young individuals with blindness in China and may not be generalizable to other age groups, cultural contexts, or countries with different health care and digital infrastructures. The recruitment strategy may have introduced selection bias, potentially attracting participants with more pronounced positive or negative experiences with DHTs. Furthermore, participant recall bias might have influenced their accounts of past health care experiences. Despite these limitations, this study offers rich, contextualized insights into the lived experiences of a typically underrepresented group in digital health research. Future research should explore these issues with larger, more diverse samples, potentially using quantitative or mixed-methods approaches to assess the prevalence of the themes identified and to evaluate the effectiveness of interventions aimed at improving health care accessibility and autonomy for people with blindness in the digital age. Comparative studies across different socioeconomic and cultural settings would also be beneficial.

This study explored how educated young adults with blindness in China navigate health care in the digital age, revealing an “empowered but excluded” dynamic. The potential for digital empowerment and enhanced independence, though present, is consistently curtailed by systematic barriers including inaccessible technologies, provider practices that limit patient autonomy, and privacy vulnerabilities. To bridge this gap, our findings underscore the necessity of a multifaceted approach: enhancing technological accessibility through robust standards adherence and inclusive co-design processes; improving health care provider competencies in patient-centered care via targeted training; and empowering young individuals with blindness by building their capacity for self-determination. Implementing these integrated strategies is vital for realizing equitable health care access and true independence for this digitally native yet vulnerable generation.