Children with neurodevelopmental disabilities and their families are at risk of developing psychological stress related to the COVID-19 pandemic and especially to the lockdown, which may determine the interruption of rehabilitation services (16). After recognizing the needs of these fragile individuals, with the support of Regional Health Authorities, we have developed specific supportive services that can be provided even remotely.
Since these tools have been supplied for the very first time during the pandemic in the great majority of patients, we thought that it would be particularly important to assess whether this new healthcare modality was responding to the patients’ needs, by evaluating parents’ satisfaction.
A particularly useful tool for the assessment of parents’ satisfaction is a questionnaire-based survey, because parents can answer questions anonymously and do not have to fear negative consequences because of their opinion. Moreover, self-administered questionnaires are - in contrast to interviews –cheaper, faster, and regarded as more voluntary (17).
Our study indicates that remote rehabilitation of children with neurodevelopmental disabilities through telemedicine is feasible and well accepted by the families. Indeed, 80.5% of them reported that they were satisfied with remote rehabilitation. The possibility to continue treatment during the pandemic and the availability of therapists from remote were considered the main advantages.
These findings are in line with previous preliminary data (18) (19) (20), which suggest that an emergency program that provides continuity of care and support with remote rehabilitation interventions may be beneficial for both the child’s and the parents’ well-being, with limited practical challenges.
Our direct experience during the pandemic demonstrates that tele-medicine in child neuropsychiatry produces positive effects for both the children and the families. On the child-side, we promoted and enabled continuity of care, maintained social contacts with their therapists, and reduced the risk of disrupting daily and weekly routines. Moreover, involving the parents in rehabilitation programs may improve the overall degree of satisfaction. Indeed, our experience confirms that the parents’ role in facilitating the rehabilitation interventions is much more prominent using an online modality, as they can be more actively engaged by the therapists, thus increasing their self-esteem in parenting. Besides, by being closer to their own needs and those of their children, we were able to support the parents for both psychological and educational aspects (18).
The sample included in the present survey was highly representative of the usual customers of Italian Childhood and Adolescence Neurology and Psychiatry Units, and all the features of in-person rehabilitation that are usually offered have been covered remotely, although through innovative tools.
The development of specific rehabilitation tools created by the therapists has allowed to translate to remote also therapies where physical contact is very relevant. An example is that of Equine-Assisted Therapy, where the therapists made video calls from the Department and created specific videos to maintain goals about the ability to relate and on self-care. Customized materials have been developed for Augmentative Alternative Communication purposes. For instance, an interactive PowerPoint file dedicated to the horse theme was created to allow working on communication skills, attention, concentration, and alternation. Based on the results of the survey, we can infer that the relationship with the horse combined with a careful reformulation of the proposals has allowed maintaining high motivation to treatment despite the distance. As a result, 84% of the families rated positively the Equine-Assisted Therapy with regard to the child’s ability to participate, and positive evaluations were recorded for other types of intervention as well.
The tools available to the families and the channels that were used were investigated in order to evaluate the accessibility to the remote rehabilitation proposal: on-line platforms, e.g. Skype, were indicated as the most adequate instruments for rehabilitation purposes.
Considering that this was the first experience of tele-rehabilitation for almost the entire sample, we anticipated there would be some limits and critical issues. Therefore, we assessed data from Sect. 2 of the questionnaire (communication and information) to evaluate the effectiveness of the information received by the families.
In order to understand whether some treatments carry more issues or pitfalls than others and can therefore be more difficult to convert to remote rehabilitation, we analyzed the data about the child’s ability to participate and the data about general satisfaction for each type of rehabilitation program. Some disciplines may be more challenging to be performed through tele-therapy (namely musculoskeletal work) and may require teaching of facilitation techniques to caregivers. In this view, the possibility to share previously recorded videos of rehabilitation sessions may help the families by supplying useful examples for continuity of care.
Moreover, children with behavioral or attention problems may face more difficulties following tele-rehabilitation sessions rather than face-to-face engagement.
One limitation of remote rehabilitation that emerged from our survey is the child’s age, especially age younger than 3 years, even though the children in this age group were too few to permit further interpretation. As a matter of fact, toddlers need face-to-face rehabilitation treatments because of the importance of physical and relational contact. Indeed, they need treatments like physiotherapy or psychomotor therapy, where the physical and relational contact is crucial.
Even though limited to the COVID-19-related lockdown, the findings of our survey indicate a positive response of caregivers of children with neurodevelopmental disabilities to remote rehabilitation. This result may encourage policy makers to implement these services into future healthcare models, recognizing the reduced costs of care and high patient/caregivers’ level of satisfaction.