Empowering health literacy in mothers of premature infants during the post-discharge period: a qualitative comparison of nurses’ and mothers’ perspectives through digital health platforms

Abstract

Introduction/objective

Premature infants require complex care following hospital discharge, placing a high demand on the health literacy of mothers. The use of digital health platforms provides innovative solutions for managing post-discharge care. However, mothers’ and nurses’ perspectives about the role of digital literacy in fostering caregiving confidence and informed decision-making may differ. This study aimed to qualitatively compare the views of mothers and neonatal nurses regarding the empowerment of health literacy through digital health platforms following the discharge of premature infants.

Methods

This qualitative research employed a conventional content analysis approach. Data were collected through semi-structured interviews with 20 mothers of premature infants, and 15 neonatal nurses at three hospitals (Imam Hossein, Shahid Beheshti, Alzahra) in Isfahan, Iran, between February and July 2025. Purposeful sampling continued until data saturation was reached. Interviews were transcribed verbatim and analyzed using MAXQDA based on Graneheim and Lundman’s method. Strategies such as triangulation, audit trails, and member checking were used to ensure rigor.

Results

Analysis identified three main themes: (1) Navigating digital information accessibility, trustworthiness, and usability challenges; (2) Digital platforms as sources of emotional and practical support; and (3) Divergent perceptions of digital literacy’s impact on caregiving confidence. Mothers valued peer support and access to varied information but faced difficulties interpreting some medical content. Nurses emphasized providing evidence-based digital resources, complemented by face-to-face education. The findings showed both convergences and divergences between mothers’ and nurses’ perspectives, underscoring the need for co-designed, culturally appropriate digital interventions.

Conclusion

Digital health platforms may enhance health literacy in mothers of premature infants during the post-discharge phase. The findings suggest that co-designed interventions integrating digital and interpersonal support may help bridge the gap between mothers’ needs and nurses’ expectations, thereby facilitating informed decision-making.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12884-025-08477-0.

Introduction/Background

Preterm birth remains a major public health concern globally, contributing substantially to neonatal morbidity and mortality. The post‑discharge care of premature infants involves complex responsibilities that demand adequate parental knowledge and skill to ensure optimal health outcomes. For many mothers, this transition from hospital to home may be stressful and emotionally challenging, as they face uncertainty about their infants’ daily care and well‑being. The period immediately following discharge therefore represents a critical window for targeted interventions that strengthen maternal capability and confidence through appropriate health education and support [1, 2].

Health literacy defined as the capacity to access, understand, and apply health information for sound health decisions serves as a cornerstone of parental empowerment. Given the multifaceted and context-dependent nature of health literacy, particularly in vulnerable populations such as mothers of premature infants, quantitative methods alone cannot fully capture the lived experiences, emotional challenges, and socio-cultural factors influencing caregiving confidence. Therefore, this qualitative study was designed to explore in-depth the perspectives of both mothers and neonatal nurses, aiming to uncover nuanced barriers and facilitators to health literacy empowerment through digital platforms. This approach allows for a richer understanding of how digital health tools interact with cultural, educational, and emotional dimensions, thereby informing culturally tailored and effective interventions. The researcher’s motivation arose from observed gaps in existing digital health education programs and a critical need to bridge mothers’ information needs with professional nursing guidance in the Iranian healthcare context [3–5]. Hence, improving maternal health literacy is essential to ensure safe and effective home‑based care after discharge.

Digital health platforms, encompassing mobile applications, telehealth systems, and educational websites, have emerged as innovative approaches for enhancing maternal health literacy worldwide. These technological tools can deliver targeted education, facilitate communication with nurses and physicians, and provide continuous guidance tailored to each infant’s needs. When used appropriately, such platforms may bridge the information gap between hospital and home, particularly for families lacking consistent access to in‑person care. Prior literature has confirmed that technology‑enabled solutions enable timely health information exchange and improve maternal competence; however, significant variations exist in their adoption, acceptability, and effectiveness across settings [6, 7].

Lubbe and Donald (2024) demonstrated in a systematic review that structured digital interventions designed for parents of premature infants substantially improved caregivers’ confidence and caregiving accuracy . Similarly, Chi and Demiris (2015) underscored the potential of remote tele‑homecare and interactive decision‑support systems in sustaining post‑NICU follow‑up quality [8]. These findings highlight the promise of digital tools for extending professional support beyond hospital boundaries. Yet, previous research often addressed either caregivers’ or healthcare providers’ perspectives in isolation, creating an incomplete understanding of their shared experiences.

Despite advances in neonatal medicine and a growing body of evidence supporting digital health tools, numerous mothers continue to depend primarily on informal online sources such as social media networks, blogs, and peer discussion forums for guidance once discharged home. These sources can vary markedly in reliability and clinical accuracy. Nurses, conversely, prioritize structured, evidence‑based digital interventions integrated into routine follow‑up as part of comprehensive neonatal care. This disconnect between health professionals and caregivers reveals a critical gap in understanding how digital health literacy is differently perceived, experienced, and operationalized by each group [9, 10].

A limited number of studies have examined this comparative dimension within low‑ and middle‑income countries. In societies such as Iran, access to specialized neonatal services and digital educational resources may be constrained by infrastructural, cultural, and socioeconomic factors. These contextual barriers affect both the development of digital health programs and mothers’ capacity to effectively engage with them. Analyzing both nurses’ and mothers’ qualitative perspectives can thus advance culturally responsive, feasible, and empowering digital educational approaches. Furthermore, exploring these two viewpoints together allows the identification of convergent and divergent experiences that may inform future policy, improve maternal support mechanisms, and foster equitable digital health integration.

Nurses, serving as frontline educators and discharge planners, hold strategic roles in shaping mothers’ post‑hospital learning processes. Mothers, simultaneously, are the principal caregivers responsible for implementing complex instructions at home. Their collective perspectives provide valuable insights into the real‑world challenges of sustaining digital health literacy beyond the hospital setting. By understanding these perspectives concurrently, effective co‑design of inclusive, user‑centered digital health interventions becomes possible [7].

In the present qualitative study, conducted within the culturally specific setting of Isfahan, Iran, we explore and compare how mothers of premature infants and neonatal nurses perceive digital health platforms as means of promoting post‑discharge health literacy and caregiving empowerment. This investigation contributes new evidence regarding the interaction between culture, digital accessibility, and maternal education. By capturing both stakeholder groups’ experiences, the study aims to clarify how digital health systems can be tailored to foster health equity for vulnerable mothers and infants during the critical post‑discharge transition.

Methods

Study design

This qualitative study adopted an interpretivist-constructivist paradigm, recognizing that health literacy empowerment is socially constructed through interactions with digital platforms and healthcare providers. A conventional content analysis approach was selected to systematically interpret textual data, facilitating the capture of both manifest and latent meanings in participants’ narratives. This method is particularly suitable for exploring complex, subjective experiences that quantitative methods cannot elucidate, thereby providing essential insights to inform the development of tailored digital interventions. The researcher’s direct clinical experience and awareness of the challenges mothers face during post-discharge care motivated this in-depth qualitative inquiry [11].The motivation for adopting this qualitative design stemmed from the researcher’s clinical observations and preliminary evidence indicating divergent digital literacy experiences and support needs among mothers and nurses. These complexities warranted an inductive, participant-driven inquiry to generate meaningful insights that respect cultural sensitivities and inform pragmatic digital health solutions for neonatal post-discharge care in Iran.

Study setting and sample

The study was conducted in three tertiary hospitals affiliated with Isfahan University of Medical Sciences: Imam Hossein, Shahid Beheshti, and Alzahra hospitals, all of which provide neonatal intensive care and follow-up services. Participants included mothers of premature infants discharged within the past six months and nurses with a minimum of two years of neonatal care experience.

A total of 20 mothers and 15 nurses participated, recruited from the three hospitals (7 mothers and 5 nurses from Imam Hossein, 6 mothers and 5 nurses from Shahid Beheshti, and 7 mothers and 5 nurses from Alzahra). The participation rate was 88%, with 5 refusals due to time constraints.

Inclusion criteria for mothers

Age ≥ 18 years.

Primary caregiver of a premature infant (gestational age <37 weeks).

Access to at least one digital device (smartphone, tablet, or computer).

Willingness to participate and provide informed consent.

Exclusion criteria for mothers

Infants with major congenital anomalies or terminal illness.

Mothers with cognitive impairments affecting communication.

Inclusion criteria for nurses

Currently working in a NICU or neonatal follow-up clinic.

Experience in educating or supporting mothers of premature infants.

Sampling

Purposive sampling was employed to ensure maximum variation in age, educational level, parity, and digital literacy among mothers and professional roles among nurses. Digital literacy levels were preliminarily assessed through self-report using a short five-item checklist (e.g., ability to use apps, search online information, and access telehealth platforms). Sampling continued until no new codes emerged across three consecutive interviews, indicating data saturation. Saturation occurred after the 18th interview for mothers and the 13th interview for nurses [12, 13]. Eligible mothers were identified and invited to participate through hospital nursing supervisors who accessed hospital discharge records. Mothers were then contacted directly by phone for recruitment. This approach ensured trust and facilitated access to participants recently discharged with premature infants, enhancing recruitment efficiency within the hospital setting.

Recruitment and data collection

Eligible participants were identified and invited by the head nurse of each NICU based on inclusion criteria. Mothers were approached by phone, and nurses were informed in person. Data were collected through individual face-to-face, semi-structured interviews conducted in a private counseling room within the hospitals. The interview guide was developed from literature and expert consultation and pre-tested with two mothers and two nurses, leading to minor revisions for clarity and cultural appropriateness. This guide has been provided as Supplementary File 1.

All interviews lasted 45–60 min and were conducted by the first author (a PhD candidate and pediatric nursing lecturer trained in qualitative interviewing) between February and May 2022. No one besides the participant and interviewer was present during the sessions.

All sessions were audio-recorded with participant consent and transcribed verbatim in Persian by the same author, then translated into English by a bilingual researcher experienced in qualitative translation. No repeat interviews were conducted. Transcripts were returned to five participants (three mothers, two nurses) for confirmation of accuracy [14].

Ethical approval

The study protocol was approved by the Ethics Committee of Isfahan University of Medical Sciences (Approval code: IR.MUI.REC.2021.055). All participants provided written informed consent. Voluntary participation, confidentiality, and anonymity were strictly followed by the Declaration of Helsinki and local ethical guidelines.

Data analysis

Data were analyzed in MAXQDA-2020 software using Graneheim and Lundman’s content analysis method. Steps included:

• Multiple readings for immersion;

• Identifying units of meaning related to health literacy and digital care;

• Condensing meaning units while preserving core essence;

• Coding and categorizing based on similarities and differences; and

• Abstracting themes to reveal latent meanings.

Although the analysis referred to “constant comparison,” this was applied for consistency checking rather than representing a grounded theory approach. The analysis followed an inductive direction. Two researchers independently coded all transcripts, compared codebooks, and discussed disagreements until consensus (inter-coder agreement = 0.90). Reflexive journaling and peer debriefing enhanced analytic rigor and minimized researcher bias [15].An illustrative example of the thematic extraction process is provided in Table 1, which demonstrates how raw textual data (‘meaning units’) were condensed and grouped into subcategories, categories, and finally abstracted into overarching themes.

Table 1.

Themes, subthemes, and sample codes

Theme	Subtheme	Sample Codes	Sample Quotations (Participant ID)
Navigating Digital Information	Access barriers	Limited device availability, Internet connectivity	"Not everyone has a smartphone at home." (Mother 9)
	Trust in sources	Misinformation concerns, evidence-based guidance	"Some info online is confusing and conflicting." (Mother 2)
Digital Support Systems	Emotional support	Peer connection, reduced isolation	"Online moms' group helped me not feel alone." (Mother 7)
	Practical support	Reminders, instructional videos	"Apps with care videos reassure moms." (Nurse 1)
Digital Literacy and Confidence	Mothers’ empowerment	Feeling prepared, anxiety over interpretation	"Having an app made me feel ready but worried." (Mother 4)
	Nurses’ emphasis	Face-to-face education, skill observation	"Nothing replaces watching them feed their babies." (Nurse 5)

Study rigor

To ensure trustworthiness, credibility was strengthened through prolonged engagement, triangulation between nurses’ and mothers’ data, and member checking of preliminary themes. Dependability and confirmability were maintained through an audit trail and reflective notes. Transferability was enhanced by detailed contextual descriptions of settings and participants and by describing cultural and digital contexts of post-discharge care [16].

Results

Analysis yielded three main themes capturing the empowerment of health literacy through digital health platforms in post-discharge care of premature infants:

1. Navigating Digital Information: Access, Trust, and Usability

2. Digital Platforms as Emotional and Practical Support Systems

3. Divergent Perceptions of Digital Literacy’s Role in Care Confidence

Theme 1: navigating digital information: access, trust, and usability

Both mothers and nurses acknowledged the growing reliance on digital platforms for health information. Mothers described using social media groups, mobile apps, and internet searches as primary sources:

“When I was home alone with my baby, I searched Google and joined a Facebook group for moms like me. Sometimes I found good advice, but other times it was confusing and overwhelming.” (Mother 5, low digital literacy)

Nurses emphasized the need for curated, evidence-based digital content:

“Many mothers come with misinformation from the internet. We try to guide them to reliable apps and websites, but not all have access or digital skills.” (Nurse 3, NICU educator)

Mothers with higher education levels reported greater confidence navigating digital information, while those with limited education expressed more frustration. This theme underscores the critical importance of designing accessible, trustworthy digital resources tailored to mothers’ literacy levels and cultural contexts.

Theme 2: digital platforms as emotional and practical support systems

Mothers valued digital platforms not only for information but for emotional support and peer connection:

“The online group helped me feel less alone. Sharing stories with other moms gave me hope and practical tips especially when I couldn’t visit the clinic as often.” (Mother 7, multiparous)

Nurses recognized digital tools as adjuncts to traditional education, facilitating continuous support:

“We use apps to send reminders and videos about feeding and care. It reassures mothers and reduces clinic visits, which is vital for those living far away.” (Nurse 1, clinic nurse)

Mothers across digital literacy levels appreciated emotional connectivity, emphasizing the role of peer support, whereas nurses focused on practical education delivery.

Theme 3: divergent perceptions of digital literacy’s role in care confidence

A key finding was a contrast between mothers' and nurses' views on digital literacy on caregiving confidence. Mothers felt empowered by digital access but also expressed anxiety about interpreting information:

“Having the app made me feel more prepared, but I still worried if I was doing things right. Sometimes I wished a nurse could just show me in person.” (Mother 4, primiparous, moderate literacy)

Nurses tended to emphasize direct education and hands-on training as primary confidence builders, viewing digital tools as supplementary:

“Digital resources are helpful, but nothing replaces face-to-face teaching and observing mothers’ skills, especially given cultural preferences for direct interaction.” (Nurse 5, NICU head nurse)

This divergence reflects differing professional and lived experiences, suggesting the need for integrated approaches combining digital literacy with interpersonal support.

Summary of similarities and conflicts

Both groups agreed on digital platforms’ potential to enhance health literacy and post-discharge support. Mothers prioritized emotional connectivity and immediate access to diverse information, while nurses emphasized accuracy, structured education, and mitigating misinformation. These findings suggest that digital interventions should not only provide accurate information but also integrate peer-support functions that address mothers’ emotional needs while aligning with nurses’ emphasis on evidence-based education and hands-on training. Such co-designed interventions may bridge existing gaps and enhance the efficacy of post-discharge care.

Discussion

This study revealed three prominent themes regarding health literacy empowerment of mothers via digital platforms during the post-discharge period: (1) navigating digital information focusing on access, trust, and usability; (2) digital platforms serving dual roles as emotional and practical support systems; and (3) divergent perceptions between nurses and mothers regarding digital literacy’s impact on caregiving confidence. These findings highlight the increasing role of digital tools as both informational and psychosocial resources in neonatal care transition while drawing attention to challenges related to information accuracy, variability in digital literacy, and differing priorities between mothers and healthcare professionals.

Mothers’ active use of a variety of digital sources, including social media groups, mobile applications, and general internet searches, aligns with a contemporary pattern of health information-seeking behavior [17, 18].This trend necessitates that healthcare practitioners recognize and integrate these ubiquitous digital practices into care models responsibly. However, the reliance on largely unregulated sources, exemplified by Mother 5’s experience of conflicting advice, poses risks of misinformation, a concern echoed by Nurse 3. These observations resonate with previous research, which notes the abundant but variable quality of digital health information, challenging individuals with limited health literacy [19–21].

The nurses’ emphasis on curated, evidence-based digital content reflects their professional responsibility to safeguard patient safety and ensure clinical applicability of health information. This difference reveals an underlying tension: mothers prioritize accessibility and immediacy, even when consulting less vetted sources, whereas nurses value accuracy and structured education. Barriers such as limited digital literacy and information overload, identified through Mother 2’s experience, are consistent with challenges documented in digital health equity literature [17, 22]. Designing digital platforms with sensitivity to diverse digital competencies is paramount; employing user-centered design principles with plain language, visual supports, and interactive features can enhance accessibility across literacy levels [19, 23].

Besides information provision, a notable finding was the dual role digital platforms play in delivering emotional and practical support. Mothers valued online forums primarily for social connectedness and alleviating isolation during a stressful post-discharge period, as articulated by Mother 7. Such peer support groups have demonstrated therapeutic benefits for medically vulnerable parents[24, 25]. Nurses acknowledged digital tools as valuable adjuncts that reinforce traditional education through reminders and instructional videos, extending care beyond clinic walls [26, 27]. These technologies may reduce healthcare burdens and facilitate telehealth trends in chronic care management [28, 29]. Collectively, this theme underscores digital platforms’ capacity to bolster health literacy through both educational and psychosocial dimensions.

A salient contrast emerged between mothers’ and nurses’ perceptions of digital literacy’s influence on caregiving confidence. Mothers felt cognitively prepared by digital access but often experienced anxiety in translating information into practice, resulting in residual doubts about care adequacy. Mother 4's reflection, “Having the app made me feel more prepared, but I still worried if I was doing things right,” encapsulates this paradox. Nurses, conversely, prioritized hands-on education and direct observation to cultivate caregiver self-efficacy, consistent with cultural and clinical norms prioritizing face-to-face training [30, 31]. This divergence signals the need for integrative approaches merging digital literacy enhancement with personalized interpersonal support.

The identified similarities and tensions between maternal and nursing perspectives form a critical foundation for developing future interventions. While both groups recognize digital platforms’ potential to strengthen health literacy and post-discharge care, their differing emphases—mothers’ desire for emotional connection and diverse information sources versus nurses’ insistence on accuracy and structured education—demand co-designed digital solutions [32–34]. Such interventions should harmonize rigorous evidence-based content with emotionally supportive, user-friendly interfaces. For example, integrating authenticated, healthcare provider-moderated peer-support forums could address community needs while mitigating misinformation[35, 36].

Further research should explore context-specific, practical digital health strategies tailored to the Iranian healthcare environment. Innovations such as personalized, culturally appropriate computer courses could enhance mothers’ critical appraisal skills for online health information. Longitudinal assessments of digital interventions’ impact on maternal health literacy, caregiving confidence, and neonatal outcomes should be prioritized for sustained evidence generation.

Limitation

This qualitative study’s findings should be interpreted in light of certain limitations. The purposive sample from specific Iranian tertiary hospitals constrains transferability beyond similar contexts. Self-reported data are subject to recall and social desirability biases. The study focused exclusively on mothers and nurses, omitting perspectives from other stakeholders such as physicians and family members, which could provide additional insights. Methodologically, researchers' preconceptions and inherent subjectivities in qualitative analysis may influence findings despite reflexive measures. Additionally, rapid technological evolution may limit the longevity of conclusions about specific digital platforms, underscoring the need for ongoing context-adaptive research.

Conclusion

Digital health platforms represent promising avenues for empowering health literacy among mothers of premature infants during vulnerable post-discharge periods. The study reveals both convergences and divergences in mothers’ and nurses’ perspectives on digital literacy’s role in caregiving confidence, reinforcing the necessity of co-designed, context-tailored interventions. These interventions should integrate user-centered digital tools with face-to-face support to optimize neonatal care outcomes and respond effectively to the nuanced needs of diverse caregivers.

Authors’ contributions

Atefeh Shamsi conceptualized and designed the study, supervised data collection, and led manuscript writing. Mahboobeh Namnabati contributed to data collection and analysis. Asghar Ehteshami provided expertise on digital health technologies and participated in data interpretation. Hamed Zandi Esfahani assisted in literature review and manuscript preparation. All authors reviewed and approved the final manuscript.

Data availability

The data that support the findings of this study are available from the corresponding author upon reasonable request, with consideration to privacy and ethical restrictions.

Declarations

Ethics approval and consent to participate

The study was approved by the Ethics Committee of Isfahan University of Medical Sciences (Approval Number: [IR.MUI.NUREMA.REC.1400.055]). All procedures were conducted in accordance with institutional and national research committee ethical standards and the Declaration of Helsinki.

Consent for publication

All participants voluntarily agreed to participate in this research after being provided with comprehensive information regarding the study aims and procedures.

Competing interests

The authors declare no competing interests.