Between Hope and Skepticism: Parent and Provider Expectations of Artificial Intelligence as a Bridge to Human-Centered Care for Children With Chronic Illness

Abstract

Background: Parents of children with chronic diseases in rural Iran experience profound challenges, including limited access to pediatric specialists, social isolation, and severe financial strain. Concurrently, healthcare providers face workforce shortages, administrative burdens, and fragmented referral systems. This study aimed to explore unmet care needs and comparative perspectives of parents and providers regarding the integration of artificial intelligence to strengthen chronic disease management in resource-limited rural settings.

Methods: Using a qualitative descriptive design, we conducted semi-structured interviews with 20 parents of children with chronic illnesses and 15 healthcare providers (physicians, nurses, and community health workers) from rural health centres in Iran. Participants were selected through purposive sampling based on direct experience with pediatric chronic disease management in villages (< 20,000 population). Data were analysed using conventional content analysis with iterative coding to derive emergent themes.

Results: Five key themes emerged: (1) Unmet daily care needs including geographic barriers to specialists, maternal emotional isolation, and catastrophic out-of-pocket expenses; (2) Systemic constraints faced by providers, notably administrative overload ("pajama time"), critical workforce shortages, and inefficient referral pathways; (3) AI as a potential bridge through symptom prediction models for early intervention, chatbots for emergency guidance, and AI-enabled teleconsultations to reduce unnecessary travel; (4) Divergent trust narratives parents expressed skepticism about autonomous AI decision-making while providers raised concerns about data privacy, workload implications, and erosion of clinical authority; and (5) Integration pathways emphasising AI embedded within the existing Behvarz (community health worker) network, mandatory digital literacy training, and co-designed platforms incorporating local cultural beliefs.

Conclusion: AI technologies show promise for augmenting, though not replacing, human-centred care in rural pediatric chronic disease management. Successful implementation requires culturally resonant, transparent tools developed through participatory design with families and providers, robust data governance, and strategic alignment with Iran's primary healthcare infrastructure. This context-sensitive framework prioritises equity, trust-building, and caregiver empowerment while acknowledging the irreplaceable role of human empathy in chronic care delivery.

Patient or public contribution: Parents of children with chronic illnesses and healthcare providers were central to this research as knowledge partners rather than passive subjects. Twenty parents with lived experience of caring for a child with chronic disease in rural settings, alongside 15 frontline healthcare providers, actively shaped the study through in-depth sharing of their experiences during semi-structured interviews. Their narratives directly informed all emergent themes and the resulting conceptual framework. To ensure interpretive validity, we conducted member checking with a purposive subset of participants (n = 8 parents and n = 6 providers) who reviewed preliminary findings and provided feedback on whether the themes accurately reflected their realities and concerns. This iterative validation process strengthened the trustworthiness of our analysis and ensured that the final framework resonated with the everyday challenges and aspirations of rural families and providers. While participants were not involved in the initial study design or manuscript drafting due to the exploratory nature of this qualitative investigation, their experiential expertise fundamentally shaped the research outcomes and recommendations for culturally grounded AI integration. Their contributions transformed abstract technological possibilities into contextually meaningful pathways for supporting rural pediatric chronic disease management.

Keywords: artificial intelligence; caregivers; chronic disease; health services accessibility; qualitative research; rural health services; telemedicine.