Parent and Service Provider Perspectives of a Digital Developmental Surveillance and Service Navigation Program, Watch Me Grow Electronic (WMG-E), in Rural and Regional Australia: A Qualitative Study

doi:10.21203/rs.3.rs-4178967/v1

Download PDF

Research Article

Parent and Service Provider Perspectives of a Digital Developmental Surveillance and Service Navigation Program, Watch Me Grow Electronic (WMG-E), in Rural and Regional Australia: A Qualitative Study

https://doi.org/10.21203/rs.3.rs-4178967/v1

This work is licensed under a CC BY 4.0 License

Version 1

posted

You are reading this latest preprint version

Background

Encouraging healthy childhood development and aiding the early identification of developmental difficulties are crucial to providing the best possible outcomes. Young children in rural areas are at a higher risk of missing timely developmental screening than their non-rural counterparts. This study examined the feasibility and acceptability of a digital developmental surveillance program with a service navigator, Watch Me Grow-Electronic (WMG-E), trialled in rural Australia via a randomised controlled trial (RCT).

Methods

Ten parents who participated in the RCT and six service providers were interviewed. All parents completed the WMG-E weblink questionnaire on their digital devices. Five parents in the intervention group received ongoing support from a service navigator after completing the questionnaire. Transcripts were analysed via reflexive thematic analysis.

Results

The study revealed barriers and enablers of both the existing Child and Family Health Services (CFHS) and the WMG-E program comprising of a weblink and service navigation. Enablers of the CFHS included the flexible service options and comprehensive support model, while also acknowledging the resource barriers and service capacity limitations during the COVID-19 pandemic. Enablers of WMG-E weblink included its valuable feedback on child development, digital accessibility benefits, and user-friendly interface. Barriers of the WMG-E weblink included limited clinician oversight during survey completion, and technological barriers related to the digital format. Enablers of the WMG-E service navigation included the ability to address service gaps by connecting families to local services, provide support during waitlist periods, and alleviate the strain on understaffed remote healthcare facilities.

Conclusions

Access to digital support was perceived as particularly valuable during the COVID-19 pandemic when services were closed. The WMG-E program offers a promising avenue to improve the accessibility and uptake of developmental screening services in rural Australia when functioning in harmony with existing care providers.

Trial registration:

The study is part of a large randomised controlled trial (Protocol No. 1.0, Version 3.1) was registered with ANZCTR (registration number: ACTRN12621000766819) on July 21st, 2021 and reporting of the trial results will be according to recommendations in the CONSORT Statement.

Child development

Developmental checks

Digital developmental surveillance

Service navigation

Regional and rural families

Qualitative inquiry

The early detection of childhood developmental conditions is pivotal for increasing the uptake of targeted intervention programs and providing the best outcomes for children (1–4). Yet, a substantial number of children who could benefit from early interventions are not identified in a timely manner to receive relevant intervention and supports, in particular the rural setting (5, 6). Hence policies and strategies that focus on the early years have recommended the integration of universal developmental surveillance into routine well-child visits, with screening undertaken in children prior to the age of three years (7–9).

Children in rural areas are at greater risk of missing well-child visits that provide routine developmental screening, and hence at greater risk of delayed identification and intervention for developmental disorders (10). Rural families also face many barriers to accessing the right health services, including the limited availability of health services, lengthy journeys to service providers, financial constraints, and the complexity of navigating the health system (11, 12). These barriers are magnified in Australia, where the vast land area combined with a highly dispersed population results in nearly a third of the population living in regional and remote areas (13). Hence, Australia’s context requires a robust developmental surveillance system that is tailored to its unique geography.

To address this need in the state of New South Wales (NSW), the Child and Family Health Service (CFHS) provides comprehensive care services, including well-child checks, at no cost to families. However, for individuals in geographically isolated areas, access to these services is limited (11, 12), highlighting the need for innovative approaches to enhance service reach. The Watch Me Grow-Electronic (WMG-E) program represents an example of one such innovation, offering a digital developmental surveillance platform that aims to enhance existing services.

WMG-E is a weblink that was developed to empower and engage parents to monitor their child’s development and guide parents towards comprehensive health services when risks are identified (14). The weblink incorporates the Centre for Disease Control and Prevention’s “Learn the Signs. Act Early.” (LTSAE) developmental surveillance tool in a digital format with age-specific developmental checklists and ‘red flags’ for children aged zero to five years (15) as recommended in the NSW Health Personal Health record (“Blue Book”) (16). This digital integration enables parents to actively participate in their child’s developmental monitoring from the convenience of their homes and other community services they engage with, using mobile phones or laptops, decreasing the reliance on face-to-face visits. Once engaged, the program sends automated reminders to complete the developmental checks again at the next recommended ages and stages, facilitating routine screening and ongoing monitoring. If concerns are raised on LTSAE red flag items, parents are guided towards more comprehensive health services with the support of a service navigator. The role of the service navigator is to ensure that families receive more detailed assessments and ongoing care to enhance the uptake of recommended services (17).

The potential impact of WMG-E is significant in rural Australia, where the upscale of virtual care models could overcome barriers posed by traditional health services (18). The digital approach of the WMG-E program aims to supplement limited workforces and address a significant service gap in rural and remote areas. However, the transition towards digital platforms like WMG-E necessitates a qualitative exploration to gauge feasibility and acceptability among end-users.

Engaging patients, service providers and the public directly in the development of health systems ensures that research outcomes are grounded in lived experience, which is crucial for high-quality and relevant findings (19, 20). People living in rural and remote areas often face increased barriers to participation in health research and may be unjustly excluded from participation. It is therefore important to capture the perspectives of community members to support partnered research in underserved areas (21). A qualitative approach that captures the perspectives of rural families/end users is likely to enrich the research process, resulting in higher quality outcomes that are actionable and beneficial in real-world settings, with a tangible impact on healthcare delivery in the rural and remote setting (22).

Thus, this study aimed to understand the perspectives and experiences of rural families who used WMG-E to monitor their child’s development, and service providers involved in the program’s implementation. This aim was achieved by examining:

The acceptability, adoption, appropriateness, fidelity, and feasibility of the WMG-E weblink as a sustainable digital support tool for rural families and CFHS; and

The utility of integrating a service navigator within the WMG-E program, with a focus on facilitating referrals, establishing connections to relevant services, and enhancing uptake of recommendations.

The findings from this study provides richly textured and nuanced insights into the feasibility and logistics of digital developmental surveillance tools in rural settings and their alignment with the needs of local families and healthcare providers.

Study Context

The current study was conducted as part of a randomised controlled trial (RCT) (17) to qualitatively explore the effectiveness of the WMG-E weblink. Specifically, the weblink was evaluated to determine its capacity to identify child developmental needs and examine whether a service navigator increases engagement and uptake of services by facilitating access to relevant services and providing continuity of care. The RCT was conducted in two sites: (1) Murrumbidgee, NSW (a rural/remote site) and (2) Fairfield, South Western Sydney NSW (an urban, multicultural site). Participants (parents/caregivers) were allocated into either a 'care as usual' (CaU) group or an intervention group. Both groups used the WMG-E weblink to complete a digitalised version of the LTSAE child developmental surveillance tool (15), the Kessler 10 (K-10) (23) for parental mental health, and the WE CARE (24) to determine family social care needs (employment, housing, financial and food security). If risks were identified (i.e., one or more developmental and/or psychosocial concerns, or K10 scores ranging from 20–24), participants received electronic resources guiding them to health services that can be accessed for more detailed assessments. If there were no risks identified, participants received a results page which states no particular risks or concerns have been raised.

Our research team has decided to report our findings by site, as there are distinct implications and needs being put forward and addressed by the questions and responses relevant to each site contexts – for instance, language and cultural factors may be more common to the urban, multicultural site, and so issues and enablers around these factors must be addressed and discussed further into their health and social care system; whereas workforce and demand in resources covering the large geographical areas of the rural/remote site may be put to light and therefore need more investigations and discussions.

Intervention Group

After completing the questionnaires, families in the intervention group received continuity of care in the form of a service navigator who supported families on a case-by-case basis, to identify their needs and link them to relevant services or resources, as required. The primary role of the service navigator was to build working relationships, address any barriers and support families while they learn to self-navigate the health and social care system. Follow-up questionnaires at six and 12 months measured engagement with and use of support services.

Control Group (CaU)

The CaU group did not receive continuity of care via a service navigator. Participants received the results of the LTSAE questionnaire, along with electronic resources for general guidance and a recommendation to contact local services for additional support if developmental concerns were identified. If questionnaire results indicated an acute crisis (i.e., K10 ≥ 25 and/or risk of homelessness, domestic violence, loss of electricity or food), participants were excluded from the study and immediately contacted by a researcher to assist them in engaging with support services.

More details about the specifics of the study design are available in the protocol paper (17).

Sampling and recruitment

Families who attended CFHS, refugee health services, supported playgroups, non-government organisation services, general practitioner (GP) clinics, or paediatric clinics within the Murrumbidgee Local Health District (LHD) were informed of the WMG-E study by their service provider. Those who consented to the study and participated in the RCT were asked to indicate their consent to being contacted regarding participation in the qualitative component of the study. Those who consented were contacted for feedback on their overall experience about the WMG-E program. Roughly one in ten of the 227 families from the regional/rural site of Murrumbidgee (i.e., 25 families) were then invited directly by a researcher after the 12-month follow-up period for an interview. Ten parents (six intervention, four control) were available to be interviewed in a timely manner and they formed the study sample. Similarly, service providers who participated in the study’s implementation were approached to provide their feedback on using WMG-E as a digital support tool for CFHS. Six service providers were invited to participate in a semi-structured interviews, and one service navigator, who was part of the WMG-E project team, were invited to participate in a service navigator focus group. Information about the study was presented to potential participants using information sheets. Written informed consent was obtained from participants, including consent for audiotaping.

Setting

Murrumbidgee LHD spans 125,243 km² across southern NSW, operating 33 public hospitals and 12 community health centres (25). Approximately 13% of the district’s population live in areas of high socioeconomic disadvantage, with 10% of families experiencing low-income and welfare-dependence (compared to 8.8% for entire NSW) (25). The Murrumbidgee primary care network consists of CFHS, GPs, paediatricians, pharmacies, and local government councils. In NSW, the My Personal Health Record (“Blue Book”) (26) is the primary tool available for families to monitor the progress of their child’s physical and emotional development. This developmental surveillance handbook is provided to parents at the time of their child’s birth, and available to children born interstate or overseas. Links to a range of support and parenting services are available in the Blue Book, including translated versions for non-English speaking families. Conducted in the context of the COVID-19 pandemic, this study coincided with a significant reduction in the in-person service capacity of the CFHS. This period was marked by heightened health and safety measures, necessitating a shift in traditional service delivery methods. Face-to-face health services were hindered due to closure of the community clinics and the reassignment of staff for COVID-19-related duties.

Participants

Data were collected from 16 participants including ten parents and six service providers. Of the ten parents, six were intervention families and the remaining four were control participants. Majority of the parents (90%) were females; with 60% aged between 31 to 40 years, 30% aged between 21 to 30, and the remaining aged 41 to 50. All participants had attained education to the level of high school (30%) or above, with 20% having a bachelor and 20% a postgraduate degree and 30% a Vocational Education Training. Most of the family participants (80%) identified themselves as Australian, with one as Aboriginal/Torres Strait Islander Australian, and another identified as non-Australian. Every parents spoke English as their primary language spoken at home.

Service providers included five staff employed within Murrumbidgee LHD and one service navigator. Of the five Murrumbidgee staff, three were engaged in management or leadership roles within the LHD, and two were employed as nurses. Data were collected from one service navigator (MU Service Navigator) based in Murrumbidgee, who participated in the focus group.

Study Procedure

Qualitative interviews were conducted online, and lasted between 30 and 60 minutes. A researcher trained in qualitative inquiry conducted the interviews guided by a semi-structured interview schedule with open-ended questions to encourage detailed responses (see Appendix 1). The focus group of our project service navigators was conducted once, which lasted for approximately 90 minutes. The same interview guide was utilised to guide our focus group. The interviews and focus group were digitally recorded and transcribed verbatim. All transcripts were de-identified prior to uploading the files to NVivo 12 software (Version 12.6.0.959, Pro Edition; QSR International, United States of America) for data analysis.

Data analysis

Reflexive thematic analysis (27, 28) was used to analyse the transcript data. A predominantly inductive approach was used, while incorporating a small degree of deductive analysis to ensure that the coding contributed to the identification of themes that align with the research objectives. Both semantic and latent coding were used to capture the explicit and underlying meanings within the data, with no attempt to prioritise one over the other. Braun and Clarke’s six-phase analytical process (28) guided the analysis. Using NVivo 12, family and service provider responses with similar meanings were organised into nodes, and those with conceptual similarities were developed into overarching themes. To enrich the depth of the analysis, two external researchers (PJH and KRB) independently coded the data and identified themes, with ongoing discussions around themes and subthemes facilitated by the WMG-E project manager (TW). The process of converging on the final themes involved a discussion between the researchers. Participant quotes were edited for grammatical errors to increase readability.

Three major themes were identified regarding enablers, barriers, and feedback suggestions about the current CFHS, the WMG-E weblink, and the WMG-E service navigator (Fig. 1).

<INSERT FIGURE 1 HERE>

Enablers of the current CFHS

Comprehensive, Friendly, and Personalised Support

Service providers emphasised the comprehensive support measures available for families. They elaborated on the diversity of support offered, from child development and playgroups to mental health and psychosocial assistance:

“[CFHS provides] a holistic approach in relation to families – keeping them safe and giving them information about making healthy and good choices for themselves and their children” (service provider SP07).

Flexibility

Both families and service providers reflected on the adaptability of the CFHS, emphasising the benefits of the quick adoption of a flexible virtual care model during COVID-19:

“We also formally implemented a two-pronged approach to our universal home visits, which meant that the first half of it was delivered by the virtual care. The second part was delivered in the home, cutting down the amount of time clinician was in the home and keeping everyone safe” (Service Provider SP07).

The flexibility of the virtual care model was exemplified by an option for in-person engagements for families who could not participate in telehealth consults. Parents described a positive experience using telehealth and service providers reported positive feedback from the service:

“If they couldn't participate in my virtual care, we went and did the universal home visit after COVID-19 screening… the feedback from the clients is they really like it [telehealth]” (Service provider SP07).

Barriers of the current CFHS

Service Capacity

Families and service providers noted limitations of the local CFHS capacity in the context of the COVID-19 pandemic. Service providers reported difficulties engaging families and COVID-related staffing challenges:

“We don’t have a local child and family health nurse, so we have to borrow one from other towns… and their visits are quite quick because they have to do community health as well” (Parent MU128).

It was reported that some families missed routine developmental screens due to staffing challenges. Service providers voiced their concern that staffing challenges would be ongoing:

“We haven't been able to fully fill the vacancies that have been left. And while we are in a situation like that, obviously we can't be offering our full range of services in the timely way, because we've had to prioritize those who most need the service” (Service Provider SP08).

One parent described how their remote location posed difficulties for accessing in-person services.

Perceived enablers of the WMG-E weblink

Informative

Numerous parents remarked on the weblink’s utility and how the feedback offered valuable insights into their child's growth and development:

“I would've had no idea that [my child] was behind with his speaking if there wasn't that simple survey” (Parent MU23).

For families where the weblink identified developmental issues, participants highlighted the weblink’s effectiveness in alerting parents to address these concerns and seek assistance:

“If you had issues, [the weblink] would flag it and then you could follow that up” (Parent MU02). “I would recommend this program for families to use as it has alerted me with some issues that I can address” (Parent MU186).

Accessibility

Both families and service providers praised the accessibility of a digital approach. Service providers described how the increasing societal transition to a digital era means that many families now have access to electronic devices. Families discussed how the weblink was readily accessible, particularly for those who prefer connecting through technology or might be more comfortable with a digital service:

“I'm not gonna go and sit down with a nurse and open my heart up with them, but that app or something like it would be more feasible and I wouldn’t have done the checks without it” (Parent MU23).

Service providers mirrored the notion that apps are beneficial in a digital era. They suggested that the weblink may be particularly helpful for connecting with tech-savvy parents:

“I think if we are going to stay relevant and engage people, apps are really necessary now” (Service Provider SP08).

Service providers highlighted benefits of the weblink for families who don’t engage with CFHS:

“Not all parents engage in child and family health. Like they may go to their GP for immunisations and sometimes the GP doesn't even look at the Blue Book. So, for them having that weblink would be really good” (Service Provider SP06).

One parent described how their remote location posed difficulties for accessing in-person services, while providers highlighted the weblink’s advantage in connecting families situated far from metropolitan areas:

“I also think in a rural area, some families don't have the ability to travel, and they don't have a car, or the nurse can't come out to visit them because it's too far. I think this [weblink] is another alternative” (MU Service Navigator).

User-Friendly

Most families expressed that the weblink was user-friendly and simple to navigate, and they could complete the survey quickly:

“I didn’t have any issues. I found it [the weblink] really easy… I think it’s a really simple tool to use” (Parent MU02).

Barriers of the WMG-E weblink

Digital Format

While the use of digital technology was identified as an enabler for service accessibility, concerns were raised about the weblink’s capacity to service families in rural and remote regions. Particular concerns were raised about the internet access requirements:

“Some of our most vulnerable families that can't access services might also be the ones that live in really remote, out of the way places that may not have the greatest service… they're also the ones that might be the most financially strapped… and they don't have access to data” (Service Provider SP09).

Additionally, one parent expressed difficulties accessing the weblink. Concerns were raised that the weblink may not be readily accessible for non-English speaking families, those with learning difficulties, or those with low health literacy:

“The next barrier would be probably their [families’] capacity to use it [the weblink]” (Service Provider SP08).

Limited Oversight

Parents and service providers expressed concerns about a model that did not directly involve clinicians for developmental and psychosocial screening. Parents indicated there was a potential for the weblink to overlook certain concerns:

“If they [Parents] actually have like serious mental health concerns, maybe things aren't getting picked up because it's behind a screen. A trained nurse can observe things in a face-to-face” (Parent MU19).

Service providers echoed this sentiment, emphasising that the survey should be conducted under the guidance of a qualified professional. They suggested that the weblink may fail to grasp the broader context and impact of parents:

“It can quite often come down to how the person's feeling on the day and how they might think that the child behaved at that particular very point when they're doing [the digital questionnaire]... unless [a clinician] is there to actually screen and talk to them around the questions and that sort of thing, they may not get the full picture” (Service Provider SP09).

Service providers shared how parents might become anxious or perceive a problem with their child if they received survey results without clinician or service navigator input:

“By [Parents] getting the results before we talk to them, they kind of freak out and it’s a bit like looking up Google doctor cause they kind of go, oh, I got a problem with my child. How am I gonna fix this?… Anxiety sort of sinks in a bit. If they didn’t have mental health [problems], then they start having them” (MU Service Navigator).

Service providers discussed how mental health and psychosocial risk might not be identified or that risk may be identified but not appropriately followed up through the weblink:

“[Parents] maybe don't see themselves as vulnerable sometimes as we do... So they can be putting in part of the information, but if they were sitting face-to-face with somebody who was skilled, that could be looking quite different” [Service Provider SP08).

One service provider shared how service navigators could help parents understand the survey results and provide parents with connection:

“I think having a service navigator [call] saying, ‘I've noticed you completed survey results. I just want to have a chat to you. Look, there's help at hand and I'll be able to give you this. And I think sort of having that sort of connection rather than just black and white writing” (MU Service Navigator).

Enablers of the WMG-E Service Navigator

Connection to Services

Service providers highlighted the value of the service navigator in assisting families to navigate an increasingly complicated healthcare system:

“[The service navigator] would be very useful because quite often people actually don't know what the first step is to access services. And it's a bit of a minefield. And if you haven't been through that system before you know, an assisted program is a good one” (Service Provider SP07).

Parents commented that the navigator provided regular follow-ups while connecting them to support:

“[The service navigator] called me a couple of times and it was all good” (Parent MU180). “It [the service navigator] was definitely a push I needed to help get those services” (Parent MU102).

Service providers discussed the ability of the service navigator to connect with families who do not interact with CFHS:

“It's good for those families that do not want to reach out to us or a direct service, as this program allows families to get support via a service navigator, at least this way we can cover all families in Murrumbidgee LHD and those we have missed” (Service Provider SP10).

Support While Waiting

Service providers indicated that the service navigator offers ongoing support and provides alternative options for families during long waitlist periods:

“We are down on staff so I can see an absolute advantage for people to be able to use something like this, have a point of contact, have someone they can talk to who can reassure redirect, prioritize. I think it's fantastic” (Service Provider SP08).

Alleviates Strain on Services

Service providers described the beneficial nature of the service navigator in redirecting and/or reprioritising workload in rural and remote regions where the service capacity is limited:

“In a remote area where we've got limited services for child and family, definitely it [the service navigator] is a good idea” (Service Provider SP06).

Feedback suggestions provided by study participants

Strengthen Collaboration

One service provider shared they were not made aware of families in need and that the project could have been improved with more collaboration between the service navigators and CFHS:

“I think it would be a good idea to have monthly meetings to discuss those families in need and we can brainstorm together in what support we could provide and to also look if we are already seeing these families and providing support. I think working together would have been better” (Service Provider SP10).

As digital technologies are increasingly embedded into daily life, there is heightened interest in the application of electronic health and digital health tools (29–32). This study examined family and service provider attitudes towards WMG-E, a developmental screening and service navigation program that was implemented in remote and regional Australia. The aim of the study was to determine the feasibility and acceptability of WMG-E weblink as a developmental screening/monitoring tool for rural families and local service providers, and examine whether the addition of a service navigator increased access to and uptake of support services.

The findings highlight the growing demand for digital-friendly early childhood services, with the digital nature of WMG-E described as a useful avenue to connect with parents who prefer digital mediums. While CFHS provides a comprehensive and diverse range of support services including telehealth, providers acknowledged the discernible gap when connecting with parents that lean towards non-traditional communication avenues. Through WMG-E’s digital interface, CFHS can now tap into a previously unexplored and rapidly expanding consumer group who desire the versatility of digital healthcare engagement (33). Further, WMG-E enables wider reach to identify people with concerns and hence would benefit from further assessment. This allows those who are identified through the WMG-E screening to be followed up by the state developmental services via the CFHS, thereby increasing efficiency of the limited resources.

For families in remote areas, physical distance presents a significant barrier to health services (11, 12). This is amplified in Australia where nearly a third of the population live in regional or remote locations (13). Service providers described how the weblink allowed families to access developmental screening services without undergoing an extensive journey to their local service provider. Given the limited reach of CFHS in some areas (34), the weblink can address a service gap. It would be particularly helpful in reducing rural families' reliance on travel, enabling them to engage with developmental checks more readily and those with specific needs to be prioritised for assessment by CFHS.

However, it is possible that not all rural families can embrace the accessibility benefits of digital health tools, with providers suggesting that the program’s dependence on internet connectivity might exclude some families. The Australian context presents a pronounced disparity between populations that can effectively use digital resources and those who cannot, often referred to as a ‘digital divide’ (35). Only one third of Australia’s total land area has mobile connectivity, leaving many rural and remote families digitally disconnected (36). Additionally, the financial burden of acquiring and maintaining a stable internet connection disproportionately affects vulnerable populations, leading to their exclusion from digital services (37). Service providers voiced concern over internet related financial strains. They indicated that programs dependent on internet connection might pose accessibility challenges for rural and vulnerable populations. Providing pre-paid internet dockets to remote families as part of the roll-out of such initiatives would help address this.

Studies corroborate that individuals living with a disability, racial or ethnic minorities, low income households, people over the age of 75 years, and people living in remote parts of Australia are less likely to have the financial security to secure internet access (38–40). Additionally, nearly 30% of Aboriginal and Torres Strait Islander people living in remote communities remain without internet (35). Thus, the combination of inadequate rural infrastructure and the financial challenges of maintaining internet connection creates a significant hurdle for priority populations, limiting their ability to engage with digital health services. It is crucial to sustain in-person services for people who cannot leverage the benefits of digital health while efforts are made to strengthen rural network coverage and equitable internet access.

Interestingly, parents did not identify age, English proficiency, or cultural barriers as significant concerns in using WMG-E. However, age-related barriers are unlikely to be raised in this cohort with 90% of parents aged 40 years or younger. It should be noted that racial and minority populations are less likely to use digital health tools (41), increasing their risk of underrepresentation in digital implementation studies. Given that English was the primary language spoken at home for all families, the sample might have limited representation of diverse backgrounds and experiences in this regional/rural cohort.

The global impact of the COVID-19 pandemic reshaped many avenues of care and necessitated healthcare innovations. In NSW, there was a significant reduction in face-to-face services (42). Service providers described how CFHS adopted a virtual care model to minimise health service disruption. While the model was well-received, providers reported significant staffing challenges which they anticipated would persist in a post-pandemic era. WMG-E serves as an example of innovation in remote service delivery with the potential to alleviate staff workload. However, apprehension exists about the efficacy of developmental screening in the absence of a clinician – as such, it is critical that when a concern is identified, parents are connected with relevant services so that the parental concerns can be clarified via a face-to-face consult. Similarly, providers noted that the absence of parent-child interactions as observed by a clinician might overlook concerns if this follow-up engagement with a clinician is not available. Evidence suggests that clinician observation of parent-child interactive practices provides a more accurate characterisation of children’s social-communication ability (43). However, remotely delivered screening tools have yielded equivalent psychometric data to those delivered in-person (44). Regardless, many factors need to be considered to optimise digital administration, such as the involvement of a service provider or navigator throughout the screening process (44). The WMG-E weblink is intended to be completed in collaboration with a service provider who the family has an established relationship with, and in this regard, it is not to be completed in isolation.

Parents expressed concern that when problems were identified via remote use of the weblink, as it was during the COVID-19 pandemic, there was no immediate follow-up to support parents in their queries, explain what the results might mean, or provide guidance in accessing services. Service providers echoed this sentiment, noting that receiving results without supportive care could be a risk for vulnerable families. The limited scope of research investigating actions taken after positive developmental screens (45) makes it difficult to determine the best ways to support families who flag at risk. However, the incorporation of a service navigator to remote screening tools as it was done in the intervention arm of the WMG-E RCT, study will address this issue as the navigator can help parents understand the screening results and guide them towards appropriate services (46).

Supportive care provided by the service navigator might overcome some of the barriers identified of the use of the weblink on its own. Transitions between various healthcare services can be confusing and complicated for patients resulting in fragmented care (47). Service providers indicated that the convoluted nature of the health system posed significant challenges for families. They described the benefits of the service navigator in providing a ‘warm hand over’ and a smooth transition between local services. Service providers also acknowledged the staffing limitations of traditional services that can lead to lengthy wait periods for families. They suggested that the weblink and navigator are particularly beneficial in a rural area with limited services, allowing families to receive supportive care during the waiting period, thereby potentially increasing ongoing engagement and follow-up with positive results. Providing continuity of care via a service navigator is a means to integrate health systems and facilitate better transitioning across care settings (46). In other fields, patient navigation systems have increased participation in both screening and adherence to diagnostic follow-up care after a positive screen (48). Service providers indicated that a navigation system would help CFHS reach families that had been missed. Hence, this system has the potential to increase the rate of both developmental screening and subsequent follow-up with specialist providers in rural areas.

In terms of study implementation, a service provider (SP10) identified a need for increased collaboration between service navigators and CFHS, particularly in recognising and addressing the needs of families. While monthly ‘triage and review’ meetings to collectively identify and support families in need were an original part of the WMG-E implementation, they were disrupted by the COVID-19 pandemic, underscoring the challenges faced in maintaining collaborative practices in restricted service environments.

Implications for Health Practice and Policy

This study underscores the growing demand for digital health services, especially in remote and rural areas where access to traditional health services is a persistent challenge. The WMG-E weblink offers a promising solution to developmental screening barriers faced by geographically isolated families in regional Australia. Its capability to engage parents and reduce the need for physical commutes addresses significant gaps in traditional service delivery. However, there are limitations. The requirement of internet accessibility and its associated financial burden might pose challenges for certain populations. Additionally, while digital tools might offer convenience, they cannot yet fully replicate the depth of clinician observations during face-to-face assessments. The introduction of service navigators can mitigate some of these concerns, offering supportive care post-screening and guiding families towards appropriate care pathways. Service navigation might also enhance care continuity and assist in bridging fragmented health services. Thus, while digital developmental screening tools like WMG-E hold significant promise, they should ideally be integrated into a broader care model, ensuring that families not only have access to digital screening but also receive necessary follow-up care and support with CFHS. Hence, the weblink and service navigator might function best in harmony with CFHS to alleviate staffing challenges and travel burden for rural families where appropriate, while keeping face-to-face visits embedded within routine practice. Outcomes from the RCT will shed light on the effectiveness of WMG-E in this respect.

Strengths and Limitations

This study has several strengths. The use of qualitative approach has provided rich and detailed insights into the end-user’s experiences of the WMG-E platform, offering an in-depth understanding of the context and nuances that quantitative data alone cannot capture. The use of multiple researchers throughout the coding and theme development process ensured research rigor and has allowed a rich interpretation of the data.

The study also has several limitations. The sample was not diverse in terms of gender and ethnicity, with 90% of parents and all service providers identifying as female. The limited inclusion of fathers and male service providers might overlook gender-based differences in outcomes. All participating families and service providers were English-speaking, which could restrict the applicability of the study's results to non-English-speaking populations. However, the WMG-E weblink was made available in other four languages besides English. Insights from a multicultural community, distinct from this study’s scope, are presented separately (49). Another limitation worth mentioning is the fact that all participants had access to the internet and/or digital devices; this study did not include the perspectives of those who lack digital access, thereby precluding findings around comparisons of services experience and engagement given by participating in a digital screening program (like WMG-E) and those who cannot do so because they do not have access to internet or mobile device.

Digital health tools like WMG-E have the potential to transform developmental screening in rural and remote areas, addressing logistical barriers and tapping into the digital preferences of the younger generation. However, to fully embrace this potential, governments must address infrastructure and financial limitations posed by internet access. It is paramount that such tools do not inadvertently exacerbate healthcare disparities, particularly in remote Australian communities. Integrating supportive elements, such as service navigators, can ensure that families are adequately guided and supported for further assessments and follow up support when needs are identified, thereby increasing the capacity and efficiency of the service system, and offering continuity of care.

Ethics approval and consent to participate

The study conforms to the principles outlined in the Declaration of Helsinki. All methods were carried out in accordance with relevant guidelines and regulations of The National Statement on Ethical Conduct in Human Research (2023). The South Western Sydney Local Health District Human Research Ethics Committee approved this study (2020/ETH01418). All participating parents have provided written informed consent prior to participation.

Consent for publication

Not applicable.

Availability of data and materials

Data from the current study will not be made available, as participants did not consent for their transcripts to be publicly released. Extracts of participant responses have been made available within the manuscript.

Competing interests

The authors declare that they have no competing interests.

Funding

This work underwent an independent peer review and was funded by the NSW Health COVID-19 Research Grants Round 2 in partnership with University of New South Wales, South Western Sydney Local Health District, Murrumbidgee Local Health District NSW Health, Sydney Children’s Hospital Randwick, Western Sydney University, Ingham Institute for Applied Medical Research, Black Dog Institute, Uniting and Karitane. The funding body did not contribute to the design of the study or in writing of the manuscript.

Authors' contributions

PH – data analysis and writing- original draft. KRB – data analysis and writing- review and editing. TW – study design, participant recruitment, data collection, data analysis, and writing- review and editing. SW – participant recruitment, data collection and writing- review and editing. CLC – writing- review and editing. MS –participant recruitment, data collection and writing- review and editing. JK – study design and writing- review and editing. JP – study design and writing- review and editing. SW – study design, supervision and writing- review and editing. VE – study design, supervision and writing- review and editing. All authors read and approved the final version of the manuscript.

Acknowledgements

We would like to acknowledge the Parents, service providers, and service navigators who participated in this study. We also would like to acknowledge and thank the Watch Me Grow-Electronic (WMG-E) study group that contributed to the scope of the project: Valsamma Eapen, John Preddy, Susan Woolfenden, Teresa Winata, Si Wang, Melissa Smead, Jane Kohlhoff, Virginia Schmied, Bin Jalaludin, Kenny Lawson, ST Liaw, Raghu Lingam, Andrew Page, Christa Lam-Cassettari, Katherine Boydell, Daniel P. Lin, Ilan Katz, Ann Dadich, Shanti Raman, Rebecca Grace, Aunty Kerrie Doyle, Tom McClean, Blaise Di Mento,Sara Cibralic, Anthony Mendoza Diaz, Jodie Bruce, Nicole Myers, Joseph Descallar, Cathy Kaplun, Amit Arora, Victoria Blight, and Angela Wood.

Clark MLE, Vinen Z, Barbaro J, Dissanayake C. School Age Outcomes of Children Diagnosed Early and Later with Autism Spectrum Disorder. J Autism Dev Disord. 2018;48(1):92–102. 10.1007/s10803-017-3279-x.
Barger B, Rice C, Wolf R, Roach A. Better together: Developmental screening and monitoring best identify children who need early intervention. Disabil Health J. 2018;11(3):420–6. https://doi.org/10.1016/j.dhjo.2018.01.002.
Zwicker JG, Lee EJ. Early intervention for children with/at risk of developmental coordination disorder: a scoping review. Dev Med Child Neurol. 2021;63(6):659–67.
Landa RJ. Efficacy of early interventions for infants and young children with, and at risk for, autism spectrum disorders. Int Rev Psychiatry. 2018;30(1):25–39.
Rosenberg SA, Zhang D, Robinson CC. Prevalence of Developmental Delays and Participation in Early Intervention Services for Young Children. Pediatrics. 2008;121(6):e1503–9. 10.1542/peds.2007-1680.
Boulet SL, Boyle CA, Schieve LA. Health Care Use and Health and Functional Impact of Developmental Disabilities Among US Children, 1997–2005. Arch Pediatr Adolesc Med. 2009;163(1):19–26. 10.1001/archpediatrics.2008.506.
Council on Children, With D, Section on Developmental Behavioral P, Bright Futures Steering C, Medical Home Initiatives for Children With Special Needs Project Advisory C. Identifying Infants and Young Children With Developmental Disorders in the Medical Home: An Algorithm for Developmental Surveillance and Screening. Pediatrics. 2006;118(1):405–20. 10.1542/peds.2006-1231.
Heckman JJ. Invest in early childhood development: Reduce deficits, strengthen the economy. Heckman Equation. 2012;7:1–2.
Mendoza Diaz A, Brooker R, Cibralic S, Murphy E, Woolfenden S, Eapen V. Adapting the ‘First 2000 Days maternal and child healthcare framework’ in the aftermath of the COVID-19 pandemic: ensuring equity in the new world. Aust Health Rev. 2023;47(1):72–6.
DeGuzman PB, Huang G, Lyons G, Snitzer J, Keim-Malpass J. Rural Disparities in Early Childhood Well Child Visit Attendance. J Pediatr Nurs. 2021;58:76–81. 10.1016/j.pedn.2020.12.005.
Skinner AC, Slifkin RT, Burden of Care for Children With Special Health Care Needs. Rural/Urban Differences in Barriers to and. J Rural Health. 2007;23(2):150–7. https://doi.org/10.1111/j.1748-0361.2007.00082.x.
Brown KA, Zurynski Y. Living in Rural and Remote Australia: Health care impacts for children with medical complexity and their families. Int J Integr Care (IJIC). 2018;18.
Australian Bureau of Statistics. Regional population [ https://www.abs.gov.au/statistics/people/population/regional-population/latest-release.
Eapen V, Hiscock H, Williams K. Adaptive innovations to provide services to children with developmental disabilities during the COVID-19 pandemic. J Paediatr Child Health. 2021;57(1):9–11. https://doi.org/10.1111/jpc.15224.
Centers for Disease Control and Prevention. Learn the signs. Act early [ https://www.cdc.gov/ncbddd/actearly/index.html.
NSW Ministry of Health. My personal health record. 2023.
Eapen V, Woolfenden S, Schmied V, Jalaludin B, Lawson K, Liaw ST, et al. Watch Me Grow- Electronic (WMG-E) surveillance approach to identify and address child development, parental mental health, and psychosocial needs: study protocol. BMC Health Serv Res. 2021;21(1):1240. 10.1186/s12913-021-07243-0.
Bradford NK, Caffery LJ, Smith AC. Telehealth services in rural and remote Australia: a systematic review of models of care and factors influencing success and sustainability. Rural Remote Health. 2016;16(4):1–23.
Entwistle VA, Renfrew MJ, Yearley S, Forrester J, Lamont T. Lay perspectives: advantages for health research. BMJ. 1998;316(7129):463–6. 10.1136/bmj.316.7129.463.
Goodare H, Smith R. The rights of patients in research. BMJ. 1995;310(6990):1277–8. 10.1136/bmj.310.6990.1277.
Pelletier CA, Pousette A, Ward K, Fox G. Exploring the perspectives of community members as research partners in rural and remote areas. Res Involv Engagem. 2020;6:3. https://doi.org/10.1186/s40900-020-0179-6.
Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2014;17(5):637–50. https://doi.org/10.1111/j.1369-7625.2012.00795.x.
Kessler RC, Barker PR, Colpe LJ, Epstein JF, Gfroerer JC, Hiripi E, et al. Screening for Serious Mental Illness in the General Population. Arch Gen Psychiatry. 2003;60(2):184–9. 10.1001/archpsyc.60.2.184.
Garg A, Butz AM, Dworkin PH, Lewis RA, Thompson RE, Serwint JR. Improving the Management of Family Psychosocial Problems at Low-Income Children's Well-Child Care Visits: The WE CARE Project. Pediatrics. 2007;120(3):547–58. 10.1542/peds.2007-0398.
Murrumbidgee LHD, Public Health Unit. MLHD at a glance 2022 [ https://www.mlhd.health.nsw.gov.au/getmedia/0f1400ac-fcc8-454d-8c5d-3122ad482915/MLHD-2022-population-health-indicators-at-a-glance.
NSW Ministry of Health. My Personal Health Record (Blue Book) 2022 [ https://www.health.nsw.gov.au/kidsfamilies/MCFhealth/Pages/child-blue-book.aspx.
Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qualitative Res Sport Exerc Health. 2019;11(4):589–97. 10.1080/2159676X.2019.1628806.
Braun V, Clarke V. Thematic analysis: American Psychological Association; 2012.
Peek ME. Can mHealth interventions reduce health disparities among vulnerable populations? Divers Equality Health Care. 2017;14(2).
Sondaal SFV, Browne JL, Amoakoh-Coleman M, Borgstein A, Miltenburg AS, Verwijs M, et al. Assessing the effect of mHealth interventions in improving maternal and neonatal care in low-and middle-income countries: a systematic review. PLoS ONE. 2016;11(5):e0154664.
Stowell E, Lyson MC, Saksono H, Wurth RC, Jimison H, Pavel M, et al. editors. Designing and evaluating mHealth interventions for vulnerable populations: A systematic review2018.
Hurt K, Walker RJ, Campbell JA, Egede LE. mHealth interventions in low and middle-income countries: a systematic review. Global J health Sci. 2016;8(9):183.
Alexander KE, Ogle T, Hoberg H, Linley L, Bradford N. Patient preferences for using technology in communication about symptoms post hospital discharge. BMC Health Serv Res. 2021;21(1):141. 10.1186/s12913-021-06119-7.
Alexander K, Mazza D. Routine developmental screening in Australian general practice: a pilot study. BMC Prim Care. 2023;24(1):143. 10.1186/s12875-023-02093-7.
Featherstone D. Remote Indigenous communications review. 2020.
Infrastructure Australia. An Assessment of Australia’s Future Infrastructure Needs. 2019.
Good Things Foundation Australia. Digital Nation Australia. Good Things Foundation Australia; 2021.
Thomas J, Barraket J, Wilson CK, Holcombe-James I, Kennedy J, Rennie E et al. Measuring Australia’s digital divide: The Australian digital inclusion index 2020. 2020.
Nelson D, Inghels M, Kenny A, Skinner S, McCranor T, Wyatt S, et al. Mental health professionals and telehealth in a rural setting: a cross sectional survey. BMC Health Serv Res. 2023;23(1):200. 10.1186/s12913-023-09083-6.
Nguyen A, Mosadeghi S, Almario CV. Persistent digital divide in access to and use of the Internet as a resource for health information: Results from a California population-based study. Int J Med Informatics. 2017;103:49–54. https://doi.org/10.1016/j.ijmedinf.2017.04.008.
Nouri SS, Adler-Milstein J, Thao C, Acharya P, Barr-Walker J, Sarkar U, et al. Patient characteristics associated with objective measures of digital health tool use in the United States: A literature review. J Am Med Inform Assoc. 2020;27(5):834–41. 10.1093/jamia/ocaa024.
Sutherland K, Chessman J, Zhao J, Sara G, Shetty A, Smith S, et al. Impact of COVID-19 on healthcare activity in NSW, Australia. Public Health Res Pract. 2020;30(4). 10.17061/phrp3042030.
Federico A, Shi D, Bradshaw J. Agreement Between Parental Report and Clinician Observation of Infant Developmental Skills. Front Psychol. 2021;12:734341. 10.3389/fpsyg.2021.734341.
Komanchuk J, Cameron JL, Kurbatfinski S, Duffett-Leger L, Letourneau N. A realist review of digitally delivered child development assessment and screening tools: Psychometrics and considerations for future use. Early Hum Dev. 2023;183:105818. https://doi.org/10.1016/j.earlhumdev.2023.105818.
Cibralic S, Hawker P, Khan F, Lucien A, Mendoza Diaz A, Woolfenden S et al. Developmental screening tools for identification of children with developmental difficulties in high-income countries: a systematic review. Front Child Adolesc Psychiatry. 2023;2.
Manderson B, McMurray J, Piraino E, Stolee P. Navigation roles support chronically ill older adults through healthcare transitions: a systematic review of the literature. Health Soc Care Commun. 2012;20(2):113–27. https://doi.org/10.1111/j.1365-2524.2011.01032.x.
Kripalani S, LeFevre F, Phillips CO, Williams MV, Basaviah P, Baker DW. Deficits in communication and information transfer between hospital-based and primary care physicians: implications for patient safety and continuity of care. JAMA. 2007;297(8):831–41. 10.1001/jama.297.8.831.
Wells KJ, Battaglia TA, Dudley DJ, Garcia R, Greene A, Calhoun E, et al. Patient navigation: state of the art or is it science? Cancer. 2008;113(8):1999–2010. 10.1002/cncr.23815.
Barr KR, Hawker P, Winata T, Wang S, Smead M, Kohlhoff J et al. Experiences and perspectives of parents, caregivers and service providers from a culturally and linguistically diverse community about a digital surveillance and service navigation approach: A qualitative study. In publishing.

No competing interests reported.

Appendix1RuralQualitative.docx

Download PDF

Version 1

posted

You are reading this latest preprint version

Parent and Service Provider Perspectives of a Digital Developmental Surveillance and Service Navigation Program, Watch Me Grow Electronic (WMG-E), in Rural and Regional Australia: A Qualitative Study

Status:

Version 1

Abstract

Background

Methods

Results

Conclusions

Trial registration:

Figures

BACKGROUND

METHODS

Study Context

Intervention Group

Control Group (CaU)

Sampling and recruitment

Setting

Participants

Study Procedure

Data analysis

RESULTS

Enablers of the current CFHS

Comprehensive, Friendly, and Personalised Support

Flexibility

Barriers of the current CFHS

Service Capacity

Perceived enablers of the WMG-E weblink

Informative

Accessibility

User-Friendly

Barriers of the WMG-E weblink

Digital Format

Limited Oversight

Enablers of the WMG-E Service Navigator

Connection to Services

Support While Waiting

Alleviates Strain on Services

Feedback suggestions provided by study participants

Strengthen Collaboration

DISCUSSION

Implications for Health Practice and Policy

Strengths and Limitations

CONCLUSIONS

Declarations

References

Additional Declarations

Supplementary Files

Status:

Version 1