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Global Public Health
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Perception about telemedicine services among parents of children with neurodevelopmental disorders in a specialised tertiary centre in Oman

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Article: 2381093 | Received 18 Dec 2023, Accepted 10 Jul 2024, Published online: 25 Jul 2024

ABSTRACT

While telemedicine has shown promise for diagnosis and treatment, its integration into specialised clinics and mainstream healthcare is slow. A study at Sultan Qaboos University Hospital, Oman, investigated parental perceptions of virtual clinics and telemedicine experiences among parents of children with neurodevelopmental disorders (NDD) conducted from January 2021 to January 2022; the cross-sectional study involved 130 participants. The study revealed that 70% of participants were male, and the mean age of the children was 6.1 ± 0.26 years. Regarding telemedicine awareness, 53% of respondents were informed, yet encountered obstacles such as poor internet service and lack of awareness. Despite challenges, 46% of respondents viewed telemedicine positively. Parents showed significant differences in their perception of virtual interviews based on interview purpose (P = 0.034), clinic type (P < 0.001), internet service quality (P = 0.029), timing conflicts (P = 0.001), lack of technology experience (P = 0.041), and awareness gaps (P = 0.012). Our study identified challenges for parents of children with NDD in utilising telehealth, primarily stemming from limited awareness and internet connectivity issues. To enhance telemedicine quality, we suggest improving internet infrastructure and promoting telemedicine awareness. Further research is needed to optimise telemedicine implementation for both diagnosis and intervention in children with NDD.

Background

Child developmental disorders are chronic physical, cognitive, speech or language, psychological, or self-care conditions that typically begin in childhood and necessitate additional coordinated services, support, or other assistance for a prolonged duration or a lifetime (Boulet et al., Citation2009). These disorders include autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), cerebral palsy, epilepsy, motor disorders, language disorders, blindness, deafness, learning disability, intellectual disability, stuttering/stammering, and other developmental delays.

Although the concept of telemedicine as a promising approach for diagnosis and aid treatment plans is not new, its widespread adoption in specialised clinics and mainstream healthcare has been relatively slow until recently (Sutherland et al., Citation2018; Tanner et al., Citation2020). Telemedicine involves the inclusion of video or audio interactive conversations through digital technology to better understand the patient's condition as a remote healthcare service and improve the quality of clinical care (Waller & Stotler, Citation2018). A systematic review found promising techniques for utilising technology in ASD assessments, such as live and delayed video observations, web/mobile tools, and phone interviews. The review indicates that although technology-based ASD screening is still developing, these methods show potential for enhancing diagnostic accessibility (Dahiya et al., Citation2021).

In neurological care, telemedicine is actively implemented in the delivery of care to specific disease populations; epilepsy, adult stroke care tele-stroke networks, rural health systems, headache medicine, and paediatrics neurology to improve accessibility to speech-language and learning pathology, neuro-ophthalmology, neuromuscular medicine (Davis et al., Citation2019; Grossman et al., Citation2020; Romero-Imbroda et al., Citation2020; Sarti et al., Citation2020). According to studies, 70% of parents of children with neurodevelopmental disorders (NDD) increased their usage of telehealth services during the COVID-19 pandemic, with a reported satisfaction rate of 50% (Hosley, Citation2022). In Italy, the implementation of telehealth programmes for children with NDDs resulted in reported enhancements in child development and growth (80%), coupled with an efficacy rate of 40% (Provenzi et al., Citation2021). These online neurological care programmes sternly embraced a solution-based approach with the continuation of care during the COVID-19 crisis with the involvement of more engagement, recognition, self-relevance, and perceived care (Shorey et al., Citation2021; Summers-Gabr, Citation2020). Telemedicine offers convenience and accessibility, enabling families to access essential medical care and support from home. This is especially beneficial for families dealing with the challenges of travelling with a child who has complex medical needs or challenging behaviours (Haleem et al., Citation2021).

Telemedicine perception among families of children with NDD in early intervention systems is established as an effectual model, especially in autism and ‘Fragile X syndrome’ (Little et al., Citation2018; Wallisch et al., Citation2019). The research evidence about the efficacious usage of telemedicine to counsel and couch NDD patients and their families shows the involvement of stringent interventionist exercise and extended reliability (Chen et al., Citation2022; Ciupe & Salisbury, Citation2020). This efficacy depends on the healthcare provider's preparedness, patient interaction experience, clinical practice, and appropriate arrangements to deliver cost-effective, timely, and safe care (Strowd et al., Citation2022).

The phenomena of telemedicine improved during COVID-19, but research suggests inequitable accessibility to telemedicine among various population strata (Karimi et al., Citation2022). Its significance among children with NDD in the Middle East North Africa (MENA) region needs to be further explored. Several obstacles hinder the widespread adoption of telemedicine in the MENA region. These include limited information and communication technology infrastructure in rural areas, high costs, and concerns about patient privacy due to the absence of standardised guidelines. Additionally, uncertainty among physicians, reluctance to shift from traditional practices, and the lack of sustainable business models add complexity to its implementation (Abouzid et al., Citation2022). For this purpose, this study is designed to collect data to determine parents’ perceptions of telemedicine as a healthcare approach to help diagnose and monitor young patients with NDD to improve treatment outcomes.

Material and methods

Study design and setting

This cross-sectional study was conducted to record parents’ perception of telemedicine as an approach to help diagnose, guide intervention, and monitor patients with neurodevelopment disorders between January 2021 and January 2022 at Sultan Qaboos University Hospital, Muscat, Oman.

Ethical consideration

The study was conducted after approval from the ethics committee and following the declaration of Helsinki. Further, it was approved by the Medical Research Ethics Committee, College of Medicine & Health Sciences, Sultan Qaboos University, MREC #2286.

Study population and sampling

A total of 130 participants were included in the study. The sample size was calculated using the ‘Raosoft’ calculator (http://www.raosoft.com/samplesize.html) with a 95% confidence interval, 8.5% margin of error, and 50% response distribution. The study utilised a convenience sampling technique for participant enrolment. Children aged below 14 years with a diagnosis of any neurodevelopmental disorders seen in developmental paediatrics or paediatric neurology clinic via a virtual method at the hospital were included. Their parents or caregivers were contacted to complete a questionnaire about their experience with virtual clinics. Data was collected from parents after their first virtual visit. Participants unwilling to provide informed consent were excluded. Before the study initiation, the detailed study objective was explained to the participants, and informed consent was obtained accordingly.

Data collection and measurement

The data was collected using a questionnaire developed by the researchers, including study-related fixed-response questions. The participants were exposed to the telemedicine programmes for eight months, and after that, either a questionnaire was provided as hardcopy or interviewed by the independent researcher on call. This questionnaire was tested as a pilot on clinicians and a small group of parents (n = 25), and adjustments were made accordingly based on professional experts’ feedback. The questionnaire's first section contained the participant's demographic details ().

Table 1. Distribution of respondents according to their background characteristics.

Parents’ perceptions of the virtual clinic and their experiences with telemedicine services were assessed in section two of the questionnaire using close-ended questions, each with a response of ‘yes’, ‘no’, or ‘to some extent’. This section of the questionnaire included 18 questions exclusively related to parents’ perceptions and experiences with telemedicine services.

In order to assess parents’ overall perception and experience with telemedicine, we created a scale of the total score by assigning a score of 1 point to each ‘yes’ response, and 0 points to ‘no’ or ‘to some extent’ responses, indicating a negative experience. Therefore, both ‘no’ and ‘to some extent’ responses were combined. The scores for all 18 questions on perception and experience about virtual clinics and telemedicine were summed, giving a maximum score of 18 and a minimum score of 0. The mean score was observed to be 10.5 (SD 3.3). The overall perception and experience about virtual clinics and telemedicine were then categorised into ‘positive’ for scores more than 10.5 and ‘negative’ for scores less than or equal to 10.5. The survey also included questions about difficulties experienced by the parents in obtaining telemedicine services. The difficulties were assessed using nine questions, each with responses of ‘yes’, ‘no’ or ‘to some extent ().

Table 3. Percentage distribution of respondents according to their response to the items of difficulties experienced with the telemedicine services.

Statistical analysis

The study considered parents’ perception of virtual clinics and their experiences with telemedicine services as the primary outcome variables and socio-demographic and difficulties-related factors as explanatory variables. There were a few missing values for the age of children, which were replaced by the values obtained through the random imputation technique. Descriptive and inferential statistical techniques and relevant statistical tests were employed for data analysis. Descriptive statistics such as frequency, proportion, mean, and standard deviation were used to describe the background characteristics and pattern of perception and experiences about virtual clinics and telemedicine. Multiple logistic regression techniques were employed to identify the significant predictors of positive perception and experience about virtual clinics and telemedicine, considering the outcome variables as dichotomous response variables. Adjusted odds ratios (AOR), together with their corresponding 95% confidence interval (CI) and p-values were reported. Multicollinearity among the independent variables was checked and found within an acceptable range (VIF < 5). Statistical analysis was performed using SPSS Version 23.0. A p-value <0.05 was considered to be statistically significant.

Results

Sample characteristics

Our study results showed that the majority of children under study were males (70%). The majority (60%) of the children were under age 6 years, and the mean age of the children was 6.1 (SD = 3) years (). More than one-third (38.5%) of the participating parents were from the Muscat region, and 27% were from the Al Batina region. An overwhelming majority (more than 80%) of the parents completed secondary school education and were between 35 and 39 years old. The average age of mothers and fathers was 36.2 (SD = 6.3) and 40.8 (SD = 7.3) years, respectively. Slightly more than half (53%) of the respondents were aware of virtual clinics. Two types of telemedicine were implemented; telephone correspondence and video calls. 56.9% of participants were interviewed using video calls. 77.7% of participants were seen in the paediatric developmental clinic, while 22.3% were interviewed in the paediatric neurological clinic. In about 94% of cases, medical doctors were involved in providing telemedicine.

Parents’ perception/experience of individual items of telemedicine services

shows parents’ perceptions of the telemedicine service and their experiences by individual items. More than eighty (88%) parents reported that the purpose of the virtual communication was explained. Meanwhile, 82.3% of the parents reported that doctors/psychologists were able to gather important information about the child. 67.7% of respondents felt they could convey their child's complaints and symptoms to the service provider during telemedicine. Nearly two-thirds (64.6%) of the parents felt that the information received during the telemedicine appointment helped make decisions about the next steps in the child’s management plan. About 69% of respondents thought the interview achieved the same goal as the physical appointment. The majority of respondents (64.5%) opined that telemedicine services took a shorter time than physical visits to a hospital. However, only 37% of the respondents said that they would recommend telemedicine services to others, while 42.3% would like to participate in future telemedicine visits. Overall, 46.2% of the parents had a positive attitude towards telemedicine services ().

Table 2. Percentage distribution of respondents according to their response to the items of the reality of the experience of telemedicine service during the pandemic of COVID-19.

Difficulties in obtaining telemedicine services

Difficulties faced by participants were demonstrated in (). 50% of respondents felt that the absence of direct interaction reduces the effectiveness of telemedicine services. In addition, 40.8% reported that telemedicine services do not fully benefit their child. Weak internet service was mentioned by 29.2% of respondents as a difficulty in obtaining telemedicine. On the other hand, most parents have smartphones (93.1%), and 34.6% have computers/laptops.

Determinants of positive perception of telemedicine

presents the differentials of parents’ positive perception towards telemedicine services according to their background characteristics and the logistic regression analysis of the positive experience of telemedicine services to identify the significant predictors after controlling the background characteristics. The differential analysis using the chi-square test indicates a significant difference in parents’ perception related to the use of telemedicine in terms of purpose of virtual interview (p = 0.034), types of clinics (p < 0.001), quality of internet services (p = 0.029), conflict in dates of telemedicine services with schedule (p = 0.001), lack of experience in dealing with Internet technologies (p = 0.041), consider telemedicine services as a burden (p < 0.001), and lack of awareness about virtual clinics (p < 0.012).

Table 4. Percentage of respondents with positive and negative experiences of telemedicine service during the pandemic of COVID-19 according to background characteristics and results of logistic regression analysis showing odds of positive experience of telemedicine services.

However, logistic regression analysis, after controlling the background characteristics, identified types of clinics, quality of Internet service, lack of experience in dealing with Internet technologies, whether considers telemedicine services as a burden, and lack of awareness about virtual clinics as significant predictors of parents’ positive perception towards the use of telemedicine (). The overall model goodness of fit, as indicated by the Nagelkerke R2, was found to be 0.472, indicating that 47.2% of variations in parents’ positive perception can be attributed to the selected independent variables. Parents of the patients visiting developmental clinics were found to be more than four times more likely to have a positive attitude towards the use of telemedicine than the parents of the patients visiting neurological clinics (AOR = 4.27, 95% CI = 3.16–10.61, p = 0.002). The odds of positive perception of telemedicine were found to be 1.48 times higher among the parents having strong internet services compared to those having weak internet services (AOR = 1.48, 95% CI = 1.12–6.45, p = 0.042). Parents with a lack of experience in internet technologies had 62% lower odds of positive perception of telemedicine as opposed to the parents with experience in internet technologies (AOR = 0.38, 95% CI = 0.06–0.87, p = 0.035). Parents who considered telemedicine services as a burden were 68% less likely to have a positive perception of telemedicine as opposed to those who did not consider telemedicine as a burden (AOR = 0.32, 95% CI = 0.35–4.82, p = 0.046). Parents’ lack of awareness about telemedicine services was found to have a significant negative association with parents’ positive perception of telemedicine. Parents with a lack of awareness about telemedicine services were 58% less likely to have a positive perception of telemedicine compared to parents with no lack of awareness about telemedicine services (AOR = 0.42, 95% CI = 0.12–0.92, p = 0.43). Parents’ demographic characteristics showed no significant association with the perception of telemedicine. Although parents of female children were found to have a higher likelihood of positive attitude, the association was not statistically significant ().

Discussion

The use of telehealth has surged in the post-pandemic era as an innovative solution that could potentially change the situation of lengthy waiting lists for clinics (Aishworiya & Kang, Citation2021; Zhang et al., Citation2020). Telehealth is an emerging field, with many authors considering its use to provide diagnostic services and early intervention to children with neurodevelopmental disorders to improve electronic health services (Fung & Florencia Ricci, Citation2020). Nevertheless, telehealth models need to be tested for their feasibility and acceptability, especially in the Middle Eastern population, where the culture of using telehealth services is diverse (Linn et al., Citation2021).

Most of the participants in our study were males (70%) and people residing in Muscat and Al-Batinah regions. This can be attributed to the geographical location of the hospital and the catchment area, which covers both regions. Furthermore, it is also related to the population density in the country, as around 40%of the Oman population resides in those two areas (National Centre of Statistics and Information, Citation2014).

The results of our study showed statistically significant differences in the perceptions of participants about the availability of expertise to utilise Internet services to attain better health outcomes in patients. A randomised control trial (RCT) examined the impact of telehealth on health-related quality outcomes (HRQO) in children with neurologic impairment, and technology reliance reported no significant impact after one year on HRQO and care coordination without family coordination (Looman et al., Citation2018).

In general, around 46% of respondents reported their experience using telehealth services to be positive. Similar results were found in other studies where parents preferred in-person visits rather than virtual clinics, especially in intervention. However, parents wished that virtual methods’ benefits could be utilised as a supplement rather than a replacement for the in-person model (Yang et al., Citation2021). Awareness about telemedicine services and experience in internet technologies were the main factors that drove the positive attitudes regarding virtual clinics. The association between awareness of technology and the acceptability of telemedicine activities was documented in a systematic review among patients and healthcare providers (Drazich et al., Citation2023).

Our data showed that 29.2% of parents reported weak internet connection as an important difficulty of the telemedicine experience. Recently, a study reported the technical challenges faced by users during their telehealth appointments, and weak internet connectivity accounted for 43.7% of cases (Nicholas et al., Citation2021). Another study showed that individuals with higher digital skills are more inclined to use and continue using telehealth services after the pandemic. Moreover, greater social and economic resources correlate with increased telehealth usage (Le et al., Citation2023).

Interestingly, although more than sixty percent of parents felt that the telemedicine interview fulfilled its goal, the appointment scheduling was flexible and took a shorter time than physical visits; only 30% preferred telemedicine services after the pandemic. A similar response was also reported in other studies, where parents reported high satisfaction with their child's telemedicine diagnostic care (Valentine et al., Citation2021). A study of 1226 participants compared patient preferences for telemedicine versus in-person visits, highlighting a clear inclination towards the latter despite telemedicine advancements. Patients valued in-person appointments for their perceived diagnostic accuracy, while telemedicine was favoured for its potential to reduce infectious diseases, reduce costs, and save time (Moulaei et al., Citation2023). These findings underscore the persistent challenge facing telemedicine implementation: negative perceptions. Despite its increasing usage, these perceptions hinder its effective adoption. Addressing these perceptions is crucial for the successful integration of telemedicine services into healthcare systems.

Our study revealed that parents’ demographic characteristics were not significantly associated with their perception of telemedicine services. While there was a slight tendency for parents of female children to have a more positive attitude, this difference was not statistically significant. This suggests that factors other than demographic characteristics may play a more influential role in shaping parents’ perceptions of telemedicine. Further exploration is necessary to understand the reasons for these attitudes and to identify additional factors that may impact parental perceptions of telemedicine.

Several factors may explain the reason that parents of the patients visiting developmental clinics were found to be more than four times more likely to have a positive attitude towards the use of telemedicine than the parents of the patients visiting neurological clinic. Patients visiting developmental clinics are more likely to have a positive attitude towards telemedicine because these clinics focus on long-term support for conditions like autism and ADHD, which can be effectively managed with virtual follow-ups and assessments. Telemedicine provides ease for regular and frequent appointments without the need for travel, making it even more valuable for families addressing developmental concerns. These families also tend to know and be comfortable using technology for educational and therapeutic purposes, making the shift less of a shock. Another reason is that developmental interventions are equally effective via telemedicine whereas neurological conditions are more challenging to diagnose and require technological interventions that can be done best in-person.

The study has some limitations, including its single-center design, small sample size, and potential selection bias among participants using telehealth services. To improve the validity and relevance of the study's findings, it would be beneficial to address these limitations through broader sampling strategies and considering regional diversity. Additionally, the variations in the level of needed support and the severity of disability among children included in the study may introduce biases that affect result interpretation. The use of diverse healthcare workers conducting virtual care interventions should also be taken into account.

Conclusion

Telehealth emerged as an innovative solution as a diagnostic and intervention service for children with neurodevelopmental disorders. It could potentially shorten the waiting lists for highly specialised clinics. However, in our study, only 46% of the respondents reported a positive experience using telehealth services, because of many difficulties such as a lack of awareness about telemedicine services and internet-related issues. According to our data, to have positive experiences with telemedicine, improving the quality of internet services, particularly in distant locations, and raising awareness about internet technologies and telemedicine services is recommended. Future studies should explore the best method to support the implementation of telemedicine in diagnostic and intervention services for children with neurodevelopmental disorders.

Authors’ contributions

The authors confirm their contribution to the paper as follows: Study conception and design: Ahmed B. Idris, Watfa Al-Mamari, & Amna Al-Futaisi. Designing questionnaires: Ahmed B. Idris, Saquib Jalees, Muna Al-Jabri, & Ahlam Gaber. Data collection & cleansing: Taif Saud Al Humaidi & Kawther Abdullah Al Ma'ashri. Data analysis: M. Mazharul Islam. Interpretation of results: Ahmed B. Idris, M. Mazharul Islam, Watfa Al-Mamari, & Amna Al-Futaisi. All authors reviewed the results and approved the final version of the manuscript.

Ethics approval and consent to participate

The study was conducted after approval from the ethics committee and following the declaration of Helsinki. Informed consent was obtained from all subjects involved in the study.

Acknowledgements

The author is thankful to all the associated personnel who contributed to this study by any means and specifically Dr. Ahlam Gaber for help with the questionnaire.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

Data generated and analysed for this study will be available from the corresponding author upon request.

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