Using the PICO (Population, Intervention, Comparator, Outcome) framework, the following inclusion criteria were defined:

The neonatal care journey was demarcated from the neonate’s admission to a neonatal ward in the first week of life and ranged from immediately after birth to 12 months of follow-up. Therefore, studies were excluded when they included only healthy neonates, neonates admitted to a nursery directly after birth, or neonates with congenital abnormalities admitted to a hospital ward later than the first week of life. Telemedicine was defined as the remote delivery of health care, without any restrictions on the technologies used [18]. Long existing technologies, such as telephonic consultations or SMS updates, were purposefully included in this review to include the whole variety of interventions. However, digital health applications that did not provide health care were excluded, such as electronic patient record systems, medical decision support tools, organization tools, or interventions used for training medical professionals. Eligible outcome measures including parental well-being or parents’ perception of the intervention were (1) PREMs, for instance focusing on the usability or satisfaction of the intervention; (2) measures on how the intervention influences the parent’s journey, for instance, travel time saved; and (3) PROMs regarding their well-being, such as depression, anxiety, self-efficacy, or posttraumatic stress disorder. These outcome measures were not confined to quantitative outcomes or validated questionnaires, as qualitative studies can provide a more nuanced description of experiences.

Articles published before the year 2000, not available in English or Dutch, without full-text availability, or with a nonempirical study design (protocols, reviews, editorials, etc) were excluded.

Medline, Embase, Web of Science, Cochrane, and Google Scholar databases were searched using the following search terms: telemedicine, neonatal care, parents or caregivers, and experience or perspective (complete search is presented in Multimedia Appendix 1). The search was performed on February 23, 2024.

Title and abstracts were screened by three independent researchers (JW, CM, FB) using the Covidence (Veritas Health Innovation) program for systematic reviews. Two discussion sessions were organized to align the interpretation of the eligibility criteria. Two reviews were needed to reach a decision, and conflicts were resolved by discussion. Full-text screening was performed by JW, CM, and FB.

The data extraction form was reviewed and tested by three reviewers (CM, FB, JW). Data were extracted by CW, and JW verified all extraction data. The following data items were extracted per included study:

Outcomes were extracted following the implementation science framework by Proctor et al [25] suggesting the categorization of outcomes into implementation outcomes (how is the implementation used and appreciated in clinical practice?), service outcomes (how does the implementation influence the way clinical care is delivered?), and health outcomes (how does the implementation affect patient/parent outcomes?). Relevant outcomes for this specific scoping review are visualized in Figure 1. For health outcomes, this review focused on components of parental well-being, for instance, stress levels, confidence in their parenting role, and self-efficacy. This outcome framework categorizes PREMs into implementation or service outcomes and PROMs into health outcomes [21].

Baseline characteristics of the included studies were presented for the study design, type of telemedicine, methods, and results categories. Extracted data were presented in an overview table and synthesized qualitatively for each step in the neonatal care journey. We defined the following steps in the journey: daily visits at the NICU, ongoing support at the NICU, transfers between NICUs, discharge from the hospital to home, and the first 12 months of follow-up.

Due to the literature review nature of this study, ethical approval was deemed unnecessary. Parents and patients were involved in the design of the study, the interpretation of the results, and writing of the manuscript via experts from the neonatal parent and patient advocacy organization Care4Neo (author SOB).

After removing duplicates, 737 studies were selected for title and abstract screening. Interrater agreements were 78.9%, 82%, and 82.6% with a Cohen κ of 0.42, 0.59, and 0.48, respectively. Full texts were screened for 158 articles, resulting in the selection of 50 included studies (see flowchart in Figure 2). Complete data extraction of the included studies is presented in Multimedia Appendix 2. Included articles were predominantly published recently, with 76% (n=38) published in the last 5 years, and 50% (n=25) originated in the United States, with Scandinavian countries as the runner-up (n=10, 20%). Parents were included when designing the intervention in 12% (6/50) of studies. Frequently mentioned purposes of the telemedicine intervention were to remotely follow up on the neonate after discharge and save the family travel time (n=14, 28%) and to allow parents to see their infant at the NICU (n=11, 22%). All purposes are presented in Table 1.

Within the 50 articles, surveys (n=36, 72%) and interviews (n=10, 20%) were the most used evaluation methods, and they included 6 to 298 caregivers per study. Most of the interventions included real-time telemedicine technology (n=32, 64%) with 58% (29/50) including videoconferencing. Mobile apps facilitated the intervention in 21 studies, mainly used for educational or supporting content (8/21, 38%) and the transition to home and remote follow-up (15/21, 71%). Interventions were often part of a comprehensive health care program, using multiple technologies to facilitate different moments of contact between parents and health care providers (Multimedia Appendix 2).

The assessed outcome categories and methods of outcome measurement are presented in Table 2. Three out of 50 studies were in the design phase and were only able to hypothesize the outcomes, and therefore they were not included in the analysis of the outcome measures. The majority of studies used surveys (36/47, 77%) to assess the parents’ satisfaction and the effect on their well-being. Qualitative research methods such as interviews, focus groups, and workshops were applied in 23% (11/47) of studies and in all (3/3) studies designing an intervention. Of the 4 studies that used health records or usage logs, 2 studies presented usage logs in addition to qualitative data, whereas 2 studies only used data from the medical records system for establishing outcomes (Multimedia Appendix 2).

The surveys used to evaluate implementation outcomes varied. Some were validated questionnaires like the telemedicine usability questionnaire. Almost all used a 5-point Likert scale format. Service outcomes were either qualitative themes (eg, privacy concerns, accessibility of health care) or the potentially avoided travel distance or time. The Parental Stressor Scale (PSS-NICU) was the most frequently used standardized questionnaire (8/25, 32%) evaluating parental stress. The Parenting Sense of Competence Scale was used in 16% (4/25) of studies to evaluate self-efficacy. Nine of the 25 studies that evaluated client outcomes using surveys used a nonvalidated questionnaire, developed by the research team, to evaluate parental discharge preparedness, self-efficacy, or satisfaction with the delivered health care. An overview of the used questionnaires is shown in Multimedia Appendix 3. Client outcomes assessing the impact on the parents’ well-being were focused on depression, anxiety, stress, bonding, and self-efficacy.

In this scoping review, we aimed to identify the potential of telemedicine interventions to improve parental well-being during the neonatal care journey of their infant. Telemedicine interventions included in our review had two main purposes: (1) to overcome physical distance through remote follow-ups and virtual family-centered rounds with remote experts, allowing parents to see their infant remotely, and (2) to prepare parents for discharge by providing information and social support. The majority of the interventions were part of a comprehensive program, entailing a telemedicine intervention with, for instance, a structured set-up over time, multiple functionalities, and moments of contact with health care providers. Of the included studies, 70% (33/47) evaluated parental opinions on the intervention, like usability and technical quality, and 66% (31/47) assessed the actual impact of the intervention on the parents’ well-being, like stress, self-efficacy, depression symptoms, and unmet needs. This review draws attention to three main gaps in the literature:

Categorization of telemedicine interventions was challenging. Included interventions were often part of a comprehensive program including multiple technologies. Unfortunately, a significant number of included studies failed to fully describe the program and, perhaps more importantly, to present the results behind parents’ satisfaction with the intervention. Moreover, the majority of the underlying studies provided limited information on the characteristics of the included parents. Factors such as age, socioeconomic status, family situation, and ethnicity influence parental needs [74,75] and are relevant when interpreting the observed impact of telemedicine, individualizing interventions, and ensuring availability of technology to all patients. Integrating findings from the included studies on both intervention satisfaction and its impact on parents’ well-being was therefore challenging. To enhance generalizability and implementation, it is recommended to provide comprehensive descriptions of the entire program and the included participants, and to particularly highlight intervention components that are vital for parents.

Furthermore, the impact on parental well-being is mainly established in studies using technology as a means to provide emotional or educational support. This suggests using the technology should not be the primary goal, but that the potential impact derived from the actual content of the delivered care, education, or support should be the goal. In other words, the telemedicine intervention should be the means and not the end. On the other hand, usage and uptake of the telemedicine intervention are essential in order to reach the intended impact. It remains important to reflect on the parental needs that are being targeted by the intervention and if telemedicine is the best intervention to improve the experience. More comprehensive, probably qualitative, research into the parental journey and the unmet needs is advised before designing new interventions. Subsequently, it is essential to invite parents to participate when designing and implementing a telemedicine intervention, using a participatory study design with, for instance, co-creation sessions.

By purposefully including the whole range of technological interventions, including mature technologies like telephone consultations, SMS, or email services which have been part of health care for decades [76], we aimed to create a comprehensive overview. Furthermore, by including studies that evaluate not only the impact on parental well-being but also parental perceptions of telemedicine interventions, we were able to demonstrate the current level of parental involvement in the different phases of telemedicine research, including designing, implementing, and evaluating interventions. Also, we did not limit our inclusion to specific study designs. These three considerations resulted in a complete overview of all technological interventions that have been studied. Despite the scoping nature of the review, and therefore missing the quality appraisal, the three reviewers facilitated a robust and transparent inclusion process by predefining eligibility criteria, performing validation sessions, and extracting data with two independent researchers.

Despite efforts to be comprehensive, this review likely missed some studies. More specifically, by excluding protocols and trial registrations, we overlooked ongoing studies, such as a cluster randomized controlled trial for virtual family-centered hospital rounds [77] and the neoPARTNER study [78]. Considering the majority of included studies were published within the last 5 years, we expect the number of studies currently being performed to be relevant. Another challenge in this review was to capture the entire scope of the parental journey, as a lack of universal terminology and definitions posed significant obstacles. To minimize the risk of missing important parental aspects, we chose very broad terms for the search string (experience, perspective, perception, depression, anxiety, stress, satisfaction, etc). With this extensive search string, we screened and included articles focusing also on parents’ views of the technology instead of solely reviewing the impact on their care journey.

Based on the included studies, several practical recommendations can be provided. This review clearly found educational and supportive telemedicine interventions, often delivered through a mobile or tablet application with multiple functionalities, have a positive impact on discharge preparedness. Furthermore, bedside cameras can be useful to improve infant bonding and reduce stress when caregivers are unable to be present at the NICU. However, an important remark is that privacy concerns of medical personnel, hypervigilance, and increased stress are pitfalls of the continuous availability of a bedside camera. Remote follow-up was often provided by a telemedicine program that includes an app and scheduled contact moments with health care providers (video or telephone). While remote follow-up improves the accessibility of health care by saving parents travel time and making parental confidence increase, it has not been proven to reduce stress, depression, or anxiety. The opportunities of telemedicine interventions, as described above, prove to be effective when used in the context of a comprehensive telemedicine program including informational provisions, moments of communication, and social support.

Telemedicine interventions have the opportunity to improve parents’ well-being during their neonatal care journey, especially when enhancing discharge preparedness and when aiming to overcome physical distance using bedside webcams, virtual family-centered rounds, or remote follow-ups. We advise future researchers to (1) properly describe their telemedicine intervention to enhance generalizability and (2) assess the impact on parents’ well-being when evaluating the intervention, ideally using a combination of validated questionnaires (PROMs; eg, the Parental Stressor Scale) and in-depth interviews. Furthermore, when designing and piloting new interventions, a critical reflection on the targeted parental needs, by involving parents in the study and using co-creation sessions, is essential to improve their journey.