Stakeholders outline ideal mobile health system for congenital heart disease home care

Caregivers, healthcare professionals and technical consultants described a six-part vision for mobile health supporting children with congenital heart disease after hospital discharge: information tailored to the individual, an interface that is easy to use, multiple media formats, rapid access, one consistent source of information and emotional support on demand. The priorities emerged from a qualitative descriptive study at a tertiary hospital in southwestern China, involving seven primary caregivers, six healthcare professionals and three technical consultants. The study identifies design needs expressed in interviews; it does not test an app or demonstrate that mobile health improves recovery, adherence or clinical outcomes.

Congenital heart disease, or CHD, includes abnormalities in the heart and great vessels that develop before birth. The research cites Global Burden of Disease estimates showing that 13 million people were living with CHD worldwide in 2019, with a mean birth prevalence of 8.2 per 1,000 live births. China’s reported birth prevalence was 8.98 per 1,000 live births, and the paper cites an estimated two to four million people living with CHD in the country. The authors report that advances in diagnosis and treatment have raised survival into adulthood to 90%–95%, making post-discharge home care an increasingly important part of long-term management.

The researchers used a qualitative descriptive design and Braun and Clarke’s Reflexive Thematic Analysis. They conducted individual, semistructured interviews in Mandarin in private rooms at the hospital, with recordings transcribed verbatim within 24 hours. Interviews lasted 20–45 minutes, and the investigators used NVivo 12 to manage anonymized transcripts. The caregivers were six mothers and one father, aged 22 to 38, from rural and urban residences, with education ranging from primary school to a bachelor’s degree. The healthcare professionals were four nurses and two physicians aged 22 to 47, and the technical consultants were three men aged 25 to 26 with master’s degrees in software engineering and previous mHealth development experience.

“Tailored to individual” was the first overarching theme. Participants said that information and recommendations should account for a child’s specific condition, treatment, comorbidities, allergies, medications, family environment, genetic background and regional culture. A caregiver argued that an application could contain correct general information yet still be practically unhelpful if it did not apply to her child. Clinicians described a related problem with exercise guidance: open-chest surgery and catheter intervention can produce different postoperative movement restrictions, while existing systems tend to provide general rather than individualized prescriptions. Personalization therefore emerged as a condition-specific requirement, not merely a way to adjust interface preferences.

The second theme, “easy to use,” reflected a shared desire for direct problem-solving without intrusive design. Participants disliked complicated registration, frequent pop-ups and push notifications. Caregivers may be exhausted and sleep-deprived after a child’s surgery, making a low learning cost and rapid access to relevant answers particularly important. Healthcare professionals similarly said that a system should make routine follow-up easier rather than add work. They described a useful configuration in which medical records, laboratory reports and patient-education resources could be accessed in one place. Technical consultants warned against prioritizing elaborate charts, points systems or other technically impressive features over the intended user’s immediate needs.

“Media in convergence” concerned the presentation of information through text, images and video rather than a single format. Caregivers wanted concise text when they needed to find key points quickly, short videos when demonstrations or complex procedures were easier to watch, and images to support unfamiliar material. One participant said a lengthy article could overwhelm a user whereas a brief video might be watched repeatedly. Clinicians also valued visual evidence when families described symptoms that were difficult to convey verbally. A nurse explained that a recording of a child’s breathing, wound or visible suture could help distinguish a minor concern from a problem that required examination. The study did not test whether video-assisted assessment would reduce hospital visits.

The fourth theme, “at the ready,” concerned immediacy and interaction. Some families lived far from the hospital and found it difficult to obtain prompt help when a concern arose during home care. A caregiver described using a WeChat group in which some questions went unanswered because clinicians were busy, and contrasted that experience with the immediate response expected from an artificial-intelligence system. The finding captures an expressed need for rapid support across the geographic and temporal gaps between discharge and follow-up. It is not evidence that real-time mobile health would be clinically safe, effective or able to manage urgent problems, none of which the study evaluated.

“One clear voice” addressed contradictions between applications and knowledge sources. Caregivers reported that two health apps could provide different answers about the same child, creating confusion for family decision-making. Technical consultants said that connecting software to several knowledge bases or relying on search-ranking logic could generate inconsistent outputs, even when engineers regarded such behavior as algorithm optimization. In their view, this was a principled error for a medical question: users needed a certain and authoritative answer rather than a recommendation based on what other users had selected. Participants also emphasized alignment with clinicians’ judgment and up-to-date scientific evidence. The interviews did not establish a governance model for producing or updating this information.

The sixth theme, “emotional support on demand,” recognized anxiety, loneliness and isolation among caregivers. Clinicians said that they understood the need for comfort but often lacked time to provide it. Caregivers wanted opportunities to communicate with other parents, share experiences and feel that they were not alone. Suggested options included peer-support platforms and anonymous spaces for people reluctant to discuss their child’s illness publicly. These suggestions fit the wider finding that a useful system would have to support not only information delivery but also connection and reassurance. The study did not test an anonymous forum, evaluate mental-health outcomes or examine possible privacy, misinformation or clinical-workload effects.

Together, the six themes portray an ideal system as a coordinated service rather than a collection of flashy features. Tailoring and ease of use formed the basic foundation, while multimedia communication, rapid availability, information consistency and emotional support extended the concept of usefulness. The findings deliberately bring together three kinds of expertise: families managing day-to-day care, clinicians overseeing recovery and technical specialists responsible for implementation. That cross-stakeholder view is the study’s main contribution. It offers a framework for considering how a future system could align clinical relevance, usability and technical robustness, but it remains a qualitative account of requirements rather than a validated blueprint or a tested clinical intervention.

The evidence has important boundaries. The research was conducted at one tertiary hospital, so the findings may not transfer directly to health systems with different resources, workflows or regional cultures. The sample was small and purposively selected, and only three technical consultants were included, limiting the range of professional perspectives represented. The researchers prioritized information richness rather than statistical representativeness and used reflexive thematic analysis, in which the researchers’ interpretive positions are acknowledged as part of the process. The primary analyst was also involved in developing the mHealth intervention discussed in the study and collaborated with a senior qualitative researcher as a reflexive partner. Consequently, the results are best read as a detailed account of priorities expressed by this particular group in one Chinese clinical setting, not as proof of clinical benefit or broad population consensus.

Subject of Research: Stakeholder-identified design priorities for mobile health support in post-discharge congenital heart disease home care

Article Title: What is an ideal mHealth for post-discharge home care of CHD: perspectives from primary caregivers, healthcare professionals, and project technical consultants: a qualitative research study

Article References: YangLan, R., Ma, F., Li, Q., Yao, W., & Peng, S. (2026). What is an ideal mHealth for post-discharge home care of CHD: perspectives from primary caregivers, healthcare professionals, and project technical consultants: a qualitative research study. Frontiers in Cardiovascular Medicine, 13, Article 1948803. https://doi.org/10.3389/fcvm.2026.1948803

Image Credits: AI Generated

DOI: 10.3389/fcvm.2026.1948803

Keywords: congenital heart disease, mobile health, post-discharge care, home care, primary caregivers, healthcare professionals, technical consultants, qualitative research, reflexive thematic analysis, patient-centered design, ideal, mHealth