Mobile applications to support parents in the transition from neonatal intensive care unit to home: a narrative review

Introduction

Background

For parents of babies in the neonatal intensive care unit (NICU), the frequently complex medical needs of their newborns create challenges in the transition home upon hospital discharge. These unique difficulties include mitigation of emotional distress and preparedness to care for a medically complex newborn. Existing research demonstrates that a smooth transition home depends upon successful communication with health providers and provision of adequate and appropriate education during hospitalization (1,2). Caregivers require increased educational and socioemotional support to be successful in this critical transition of their baby’s care to outpatient follow up (3). Additional barriers and difficulties in this process often arise for families with low socioeconomic backgrounds, those with less healthcare literacy, and for parents who do not speak English or are non-native English speakers (4,5).

Mobile health (mHealth) solutions, including mobile apps, represent an important opportunity not only to improve educational and socioemotional support resources for parents of babies in the NICU, but also to address the existing disparities in care, follow up, and readmissions for NICU graduates. Even with established disparities in healthcare due to the digital divide (6-8), smartphones are an exception and are widely available and used by many patients and their families regardless of socioeconomic status (SES) (9). In addition to the accessibility of mobile devices as a source of education and emotional support, parents of NICU babies have cited online resources and mobile apps as their desired source of assistance and reference during the transition to home (10-12).

Rationale and knowledge gap

Despite a large variety of mobile apps intended for use in clinical settings, there is relatively little existing research on the full spectrum of apps intended for use by parents of infants admitted to the NICU. Mobile apps could be an important source of support for parents in understanding the unique medical needs of their babies and in providing socioemotional resources during a particularly stressful moment in their child’s care. Furthermore, many mobile apps for new parents do not provide information about babies who were admitted to a NICU, which may include preterm infants and medically complex neonates, and many of these apps have not been developed or vetted by healthcare professionals (13). In general, given the diverse medical and pathophysiologic reasons for NICU admission following delivery, we have avoided use of the terms “premature”, “preterm”, or “medically complex” in favor of terms like “babies admitted to the NICU”, “NICU babies”, or “NICU graduates”. This choice of language is also reflected in how we opted to conduct our narrative review, which included key words generalizable to NICU babies in general rather than a specific diagnosis or reason for admission.

Objective

Through the following narrative review, we intend to provide a structured assessment of the existing mobile apps intended for use by parents of preterm and medically complex newborns as their babies complete the transition from NICU to home. Through this review, the following questions were addressed: what mobile apps currently exist for parents of NICU babies, what information do these mobile apps provide, and what research and app development would further benefit this vulnerable patient population and their caregivers? We present this article in accordance with the Narrative Review reporting checklist (available at https://mhealth.amegroups.com/article/view/10.21037/mhealth-23-10/rc).

Methods

We conducted a literature review to identify existing mobile apps intended for parents of NICU babies. On November 17, 2022, we performed a comprehensive search of multiple databases including PubMed (National Library of Medicine), Embase (Elsevier), and CINAHL Complete (EBSCO) using a combination of controlled vocabulary and keywords for the NICU and mobile apps (Table 1). The initial search did not discriminate between apps intended for use by parents and caregivers versus those for other uses in the NICU to capture the full scope of apps currently utilized in association with NICUs worldwide (Table 3).

The initial search resulted in 473 total studies, which were all imported into the online review software Covidence (14). Covidence is a web-based collaboration software platform that streamlines the production of systematic and other literature reviews. Covidence identified and removed 176 duplicates for a total of 297 studies for further screening (Figure 1). Initial screening by review of titles and abstracts excluded an additional 240 studies based on the following criteria: wrong population (e.g., pregnant patients, infants not requiring NICU admission), wrong context (e.g., labor/delivery units, pediatric intensive care units (PICUs), neonatal resuscitation prior to NICU admission), or wrong concept (e.g., focus on smartphones in general, websites, or messaging platforms/chatbots rather than novel mobile apps, or generic mobile apps not intended for this specific purpose) (Table 2).

Figure 1 Flowchart of the study selection and inclusion process.

Of the 57 full-text studies assessed for eligibility, an additional 43 were excluded for the following reasons. Twenty-nine studies were identified as referring to mobile apps intended for various clinical uses in the NICU, for example, retinopathy of prematurity (ROP) screening. Eight studies were identified as intended for educational purposes in the NICU to support either nurses or physician trainees. Lastly, six studies utilized a mobile app for parents or nurses in the NICU to document their reflections as part of a qualitative research project.

The remaining fourteen studies were critically evaluated by the research team for quality assessment and final inclusion in this narrative review. Of those fourteen studies, we ultimately excluded six additional studies for the following reasons: one article that reviewed some internet resources (15), two news articles that described some general features of new mobile apps but did not detail their development or evaluation (16,17), one article that described a mobile app intended as an educational resource about premature birth for parents in the prenatal period (18), one reference that was only an abstract (19), and one systematic review of virtual solutions for parents in the NICU that did not describe any mobile apps (20). At completion of review, eight relevant articles were included (Table 4).

Narrative review

For this narrative review, we grouped the included articles by stage of mobile app development. The general themes are as follows: App Development, App Testing and Evaluation, and Alternative App Evaluation. We organized the results in this way to highlight some potential answers to our research question about what kind of research and app development would further benefit this vulnerable patient population and their caregivers. We also aimed to emphasize the information each mobile app provides along with any unique or noteworthy features (Table 5).

App development

One of the key thematic elements in four of the eight studies in this narrative review is the app development process. These articles outlined and described a unique approach to this process in detail. For example, Lakshmanan et al. is a qualitative prospective study in which study participants were interviewed in focus groups about desired components of a mobile app for parental support during transition from NICU to home (21). A unique feature of this study was the inclusion of both parents (eleven participants total) and providers (eleven participants total) with the aim of gaining insights from both relevant stakeholders. Many of the overall domains that were identified in this study as important app features for both parents and providers are aligned with existing literature describing the unique challenges that parents face during the transition from NICU to home. These include provision of path planning and information, mitigating barriers to care after discharge, and strengthening parenting role and confidence. The authors identified their study population, patients from a safety-net center, as a limitation of this study. Yet given the potential for mobile apps to serve as solutions to the current disparities that exist in NICU patient follow up and information access, the inclusion of study participants who come from diverse and historically underserved backgrounds would benefit future studies aimed at addressing health inequity in this clinical setting.

The study by Phagdol et al. describes a conceptual framework for development of a mobile app to support parents with preterm infant home care (22). The researchers focused on the use of a mobile app to reduce healthcare access gaps and improve health outcomes in their study population in India. The authors followed an existing conceptual framework for app development outlined by Mburu, Franz, and Springer in their study entitled “A conceptual framework for designing mHealth solutions for developing countries” (23). Phagdol et al.’s focus on low- and middle-income countries (LMICs) also emphasizes the important role that mobile apps may play to remotely monitor the growth and development of premature infants. This concept may be especially useful in low-resource and rural settings where access to in-person follow up after hospital discharge may be a significant barrier for parents. The authors ensured their app was most appropriate for the intended patient population. They therefore included considerations like android phones being more commonly used than IOS iPhones, and they appreciated that diverse demographics necessitated availability of the app interface in multiple languages. Much like the previously described study by Lakshmanan et al., Phagdol et al. emphasize the critical importance of stakeholder incorporation both during early stages of app development and during the iterative process of making changes based on user feedback. The app was therefore designed around a theoretical model which ensures the best fit of content and information for the exact specifications of its intended users.

Jani et al. also recognize the potential use of mobile apps to “mitigate social disadvantage”, which they identify as a tool to remotely monitor infant health, provide social support for new parents, and to prevent recurrence of preterm births (24). Much like the app development processes highlighted by Lakshmanan et al. and Phagdol et al., this article by Jani et al. emphasizes the importance of involving key stakeholders in the early stages of mobile app development. This study design utilizes focus groups and “co-design sessions”, wherein mothers with a history of preterm birth answered pre-determined interview questions to assess a prototype of the mobile app, called “PretermConnect”, for content, design, and overall aesthetics. Unlike the study population of Lakshmanan et al., which was more homogenous, especially in terms of SES, the study design implemented by Jani et al. involved piloting their app in three distinct clinical settings with the intent to “obtain input from socially, economically, and culturally diverse individuals”. While their broader and more varied population of NICU parents shared many of the same desires for a mobile app to support them in the transition to home, unique socio-cultural differences in desired app design and interface also emerged with a more diverse population of parents providing their input. These differences included opinions about desired background color of the app and language used to identify different app sections and resources. For example, one section of the app containing articles and videos for health information and education that was originally titled “BabyUniversity” was renamed “Library” following feedback from some participants who found this language more accessible.

The article by Spargo et al. highlights a specific mobile app, outlines its development process, and reports on some of the updates that have been undertaken since its introduction to the clinical setting (25). The authors describe using semi-structured interviews with parents to develop their app “Babble” through an iterative process, much like that described by Jani et al., whereby changes were made following weekly meetings of a project group. These focus groups involved neonatal nurses, physicians, lactation specialists, and a project manager. This research team focused on producing an app that provides “a portable, fast, accessible education tool” for parents as they transition to caring for their baby at home. The mobile app this team developed also provides a balance of generic information regarding appropriate care for premature, medically complex newborns in addition to some “local” topics that prepare parents for the care their babies will receive at a specific neonatal unit (NNU) in New Zealand. Another key feature of the “Babble” app is the key milestone records section where parents can create journal entries and save photos, both of which can be shared via email or social media. Focus groups of parent participants who reviewed the “Babble” app commented that they particularly appreciated an integrated feature whereby they could share information with family and friends.

App testing and evaluation

Following app development, another important consideration is appropriate and comprehensive app testing and evaluation. Three of the articles in this narrative review considered how existing, previously developed mobile apps can be critically evaluated for measurable benefits to parents and infants.

Banerjee et al. analyzed several infant outcomes, including length of stay (LOS) in the NICU, to evaluate an Integrated Family Delivered Care (IFDC) program for parents of NICU babies (26). This program in the United Kingdom was based on other randomized controlled trials in Canada and Australia, which had demonstrated significant benefit from similar Family Integrated Care (FIC) programs. These studies had identified improvements across multiple outcomes including increased infant weight gain and decreased parental anxiety. The IFDC program evaluated by Banerjee et al. included the development and dissemination of a mobile app with the intention of providing reliable educational materials and a journal for parents to document their baby’s neonatal journey. The authors recognize that by not evaluating this mobile app separately from the rest of the IFDC program package “benefits of the App as a separate entity cannot be discerned”. Other components of the IFDC included a training program for parents facilitated by bedside nurses and one-to-one support from IFDC coordinators. Despite this study limitation, the research presented by Banerjee et al. is an example of the potential for very specific, quantitative measures, including LOS and ability to achieve full-suck feeds, to be assessed as part of the testing and evaluation of a mobile app for parents of NICU babies. Much like the highlighted journal entries feature of the “Babble” app developed by Spargo et al., Banerjee et al. also reported the importance of providing an integrated space for parents to record their own thoughts and experiences in a mobile app.

In the 2016 study by Garfield et al., the authors utilized a standardized measure of parenting self-efficacy called the Parenting Sense of Competence Scale (PSOC) (27). Much like Banerjee et al., the authors also utilized LOS as a measure for their app “NICU-2-Home” and its relative success. Not only were the authors able to demonstrate improvement across these measures because of their mobile app, but they also saw a dose-dependent relationship between app usage and these outcomes. For example, when participants in the intervention group were stratified by mean app usage, those with “above average” app usage had significantly increased improvement of their PSOC scores compared to those participants with “lower-than-average” app usage. The content of the app may have also guided some of the measures used by these authors to evaluate the relative success of their app. For example, one unique feature of the NICU-2-Home app is the “MoodTracker”, which allows parents and caregivers to monitor their own psychologic and emotional status. The use of the NICU-2-Home app also benefited users in terms of NICU LOS, which could perhaps be in part attributed to app contents like the “Passport-to-Home” section, which aims to provide a virtual to-do list to remind parents about certain milestones like CPR classes home set up prior to being ready for discharge from the NICU. The “above average” app users achieved LOS for their babies that was, on average, less than half that of their counterparts who used the app an average amount. One potential limitation of this study, as highlighted by the authors, was the relative homogeneity of the study population in terms of educational background and SES. Over 80% of their participants carry private medical insurance, and over 50% of participants held at least a college degree.

For the 2022 study by Garfield et al., the NICU-2-Home app was utilized in a larger study population to again test for improvement in PSOC scores with app usage (28). Compared to the 2016 study by Garfield et al., this 2022 study ultimately evaluated the app with an intervention cohort of 146 parents of premature infants <37 weeks’ gestation and compared their results to 110 matched controls. Much like the original evaluation of this mobile app from 2016, this more recent study demonstrated similar success in terms of increased PSOC scores amongst app users and a dose-dependent relationship between app usage and scores. Once again, more time spent on the app equated to increased PSOC scores over time versus with average and below average app usage in the intervention group. One of the key limitations of this study is the homogeneity of the study population which again included predominantly “married, educated, and nonminority” parents. The authors suggest that further work focusing on addressing the needs of a more diverse patient population may be necessary to reproduce these results in different settings. Some of the unique features of the NICU-2-Home app do mirror the perspectives and priorities of the study population from Lakshmanan et al., which was significantly more ethnically and socioeconomically diverse. For example, parents involved in both studies desired and benefitted from path planning related to discharge preparation. This overlap suggests that many of many thematic elements of a successful app for parents of NICU babies are universal, whereas some of the more specific aspects of the information provided and its format may warrant more attention to the unique needs and desires of the target population.

Alternative app evaluation

Amongst the studies included in this narrative review, we also highlight one systematic app review that investigated existing mobile apps to support parents with babies in the NICU during the transition to home after hospital discharge. The review by Richardson et al. took a unique approach in directly searching the Apple App Store and Google Play for English-language apps targeting parents with babies in the NICU (29). They used multiple measures to assess quality (Mobile Application Rating Scale: MARS), content usability (Patient Education Materials Assessment Tool for Audiovisual Materials: PEMAT-AV), and credibility (Trust it or Trash It). The authors concluded that of the eighteen unique apps targeting NICU parents, less than half could be considered acceptable educational material. They therefore determined that apps available to parents of NICU babies at the time of publication were lacking both “in terms of quality and credibility”. Overall, this study suggests that despite a seemingly significant number of smartphone apps available for free or for purchase for parents with babies in the NICU, relatively few of them have been developed and adequately vetted by trained medical professionals.

Excluded articles

During the narrative review process, six articles were ultimately excluded and “moved back” because they did not represent original research or data-driven descriptions of mobile apps for parents with NICU babies. Two such articles highlighted mobile apps not otherwise mentioned through this narrative review, although they are still pertinent examples of other mHealth solutions in this category.

Doron et al. published an article in Journal of Neonatal Nursing describing their app “MyPreemie”, which has six sections, “each designed to empower parents with information, easy-to-use tools, support, and a sense of normalization” (16). One unique feature noted in their app is the “Loss Pathway”, which allows parents who have experienced the death of a premature infant to access a special Memory Page to memorialize their baby. Even though the MyPreemie app has not been studied in a randomized controlled trial, for example, it may still serve as a helpful template for physicians and researchers who desire ideas for the scope of what a mobile app may offer parents of NICU babies.

In The Journal for Nurse Practitioners, Dr. Patricia Biller Krauskopf reviews another mobile app called “My NICU Baby” (17). She reviews the app using the NPMEDAPP criteria created by editors of the journal, which is an acronym that stands for Novel, Potential of Benefit versus Risk, Medically Sound, Ease of Use, Developer, Audience, Price, and Platform. This app was developed and supported by March of Dimes, and features educational videos to review care topics, a comprehensive virtual “textbook”, and feeding, weight, and skin-to-skin contact trackers. Overall, this mobile app represents a potential model for the scope of educational and support services that can be provided through this modality of mHealth solution.

In 2017, Dol et al. published a systematic review across four major databases (20). They reviewed experimental and epidemiological studies that considered parent-related and neonatal outcomes as a measure of the success of various electronic health (eHealth) interventions. They noted a growing interest in this topic as, at the time, over half of the included studies had been published within the prior two years. The authors chose to explore existing eHealth interventions across multiple domains including web-based platforms, video, SMS, and text messaging intended for education, communication, or both. Ultimately, this work was excluded from the narrative review because none of the articles reviewed were relevant to this present exploration of mobile apps in the NICU setting as they explored other kinds of non-app based mHealth solutions.

Discussion

Through this narrative review, we identified three categories of existing studies related to mobile apps developed for use by parents of babies in the NICU. Of these groupings of studies, each was intended to serve a specific purpose during the app development, evaluation, or critical review process. Most of the studies we reviewed, four in total, were intended to elucidate the process of developing a mobile app, usually through a process involving key stakeholders like parents and healthcare providers. There were also three articles that detailed research intended to evaluate the relative success of mobile apps in the study population for which they were developed. These studies emphasized the use of both qualitative and quantitative measures for app evaluation. Finally, we identified one systematic review aimed at critical assessment of existing mobile apps intended to support and provide education for parents. Together, these eight articles represent the scope of presently available literature on mobile apps intended for use by parents with babies in the NICU, either in the provision of socioemotional or educational support.

In the process of mobile app development, there are two key steps: design/development followed by testing/evaluation. The articles presented in this narrative review represent literature intended to address both these steps to produce apps to support parents as their infants complete the transition from NICU to home. In the design and development stage, the articles by Jani et al., Lakshmanan et al., Phagdol et al., and Spargo et al., all emphasized the inclusion of multiple key stakeholders during the development stage of app design. These authors unanimously opted to involve parents themselves in this process. Concepts like “co-design”, in which the design process is shared by those trained and untrained individuals, like Jani et al. implemented, are not unique to the development of apps for this particular purpose (30). Through this process, mobile apps may be developed that more appropriately address the specific needs and desires of a particular population. Regarding the testing and evaluation of existing mobile apps, our findings suggest that a combination of quantitative and qualitative measures may be most successful. The evaluation process may include assessments of content, usability, and efficacy (31). Quantitative measures used by Garfield et al. included the PSOC scores, while Banerjee et al. used LOS as a measure of relative mobile app success. Soliciting parent, or user, experience in this process was also an important factor in considering potential app updates, as described by Spargo et al.

Potential challenges to app development

The process of mobile app development, especially in the medical and clinical settings, may be complicated by a variety of factors. One such issue is that of “pilotitis” which refers to the inability of mHealth projects to progress from pilot stage to their accessibility and use on public platforms (32). This discrepancy between the quality and quantity of apps in the developmental stages versus in final production and available in public mobile app stores is highlighted by our own findings that very few well-vetted and critically assessed mobile apps exist on the public mobile app market for families with NICU babies.

Another important consideration to the development of mHealth solutions, especially in a clinical research setting, include concerns surrounding data security and privacy. If protected health information (PHI) will be available or shared within the app, how the app’s data will be stored and transferred must meet Health Insurance Portability and Accountability Act (HIPAA) standards. Finally, most app developers are not well-accustomed to developing apps for a clinical or research setting. If anticipated flow and pace of a project is unfamiliar, frequent communication between the medical professional members of a team and the external, software development members is essential (33).

Strengths and limitations

By starting with broad search criteria for this narrative review, we were better able to demonstrate the full scope of mobile apps intended for use in the NICU. These include, but are not limited to, apps for clinical purposes, apps for educating and supporting nursing and physician trainees, and apps to facilitate the incorporation of qualitative experiences of parents and caregivers in the NICU. We also believe that this work represents a novel investigation into the currently available mobile apps for use by parents of NICU babies that have either been developed in collaboration with physicians and parents and/or have been systematically vetted using research methods to assess the measurable impact of these apps on NICU babies and their parents.

We do also recognize that the use of broad search terms may be limitation in our study. For example, we selected to use terms like “neonatolog*” and “NICU” due to the importance of admission to a NICU as our primary population of study but, in selecting broad search terms, we may have missed articles that instead utilize other keywords to describe babies and infants with medical complexity or who were born premature. We also recognize that, in general, the narrative review format is less systematic and thorough than a systematic review, and we therefore may have neglected to include other articles detailing apps developed for parents with NICU babies.

A main limitation of this narrative review is the rapid development of new technological advances and developments in the mHealth space that continue to occur. We therefore recognize that between the time we performed our systematic searches of three major databases in mid-November 2022 and the time at which this work will be published, there will likely be additional contributions to this area of study. In fact, in the process of preparing this manuscript, we identified a study published within two weeks following our database searches in the American Journal of Perinatology. This article by Erdei et al. describes a novel app called “My Brigham Baby” that was developed to enhance the parental experience in a local NICU (34). Their pilot study had promising results, whereby measures of discharge readiness and parental confidence were both improved in the intervention group that utilized this mobile app.

Future research

Although this narrative review does not necessarily reflect the entire scope of existing mobile apps intended for use by parents in the NICU, we can ascertain from the relatively short list of studies that have critically developed and evaluated apps for this purpose that the number of apps that would be deemed medically accurate and appropriate to both educate and support families during the transition from NICU to home is relatively few. Therefore, we suggest that future research directed towards the development, evaluation, and implementation of mobile apps intended to support parents with babies in the NICU include a combination of qualitative and quantitative research aimed at soliciting the perspectives of a variety of important stakeholders. We also recommend that future studies utilize critical evaluation methods, including the randomized controlled trial, to ensure that newly developed mobile apps achieve their intended purpose of both providing support and accurate educational materials to ease the transition for parents from NICU to home. Depending on the exact population under study and the desired outcome with use of a mobile app, a variety of different measures including LOS, parenting self-efficacy, anxiety or depression scores, and time to access outpatient services like Early Intervention could all be used in this process of critical app evaluation.

Conclusions

This narrative review serves as an important summary of the existing mobile apps available to support parents as their babies complete the transition from NICU to home. Through this review, we have highlighted some of the different stages of app development and dissemination. Development of novel mobile app solutions may include structured interviews with relevant stakeholders, including parents and physicians, and a multistage iterative process of designing and piloting app prototypes. The studies presented here also emphasize the importance of population specific app development. In the case of apps intended to educate and support parents with babies in the NICU, understanding both individual needs, which may be variable depending upon SES and education level, as well as the health systems with which parents and their neonates will be interacting are important to the development of appropriate and successful mobile apps.

Acknowledgments

Funding: None.

Footnote

Reporting Checklist: The authors have completed the Narrative Review reporting checklist. Available at https://mhealth.amegroups.com/article/view/10.21037/mhealth-23-10/rc

Peer Review File: Available at https://mhealth.amegroups.com/article/view/10.21037/mhealth-23-10/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://mhealth.amegroups.com/article/view/10.21037/mhealth-23-10/coif). AL serves as an unpaid editorial board member of mHealth from November 2022 to October 2024. The other authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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