Fostering inclusion in clinical and research procedures in children with neurodevelopmental disorders through augmentative and alternative communication: a narrative review and a proposal for visual aids application in brain stimulation
Authors: Passarini Sara , Quarin Fabio , Lazzaro Giulia , Costanzo Floriana , Battisti Andrea , Valeri Giovanni , Guerrera Silvia , Casula Laura , Menghini Deny , Pirchio Sabine , Vicari Stefano , Fucà Elisa 
Published: November 2024

Background and aims

Children with neurodevelopmental disorders (NDDs) such as Autism Spectrum Disorder (ASD) and Intellectual Disability (ID) may exhibit medical and neurocognitive comorbidities requiring periodic medical check-ups. In addition, children with NDDs often experience language difficulties that hamper an effective communication in the healthcare setting, with potential deleterious effects on their compliance. In turn, these challenges may affect accessing healthcare resources and receiving adequate short- and long-term assistance for their primary symptomatology and any related comorbidities. Communication impairments may also pose barriers for involving children with NDDs in clinical trials and research procedures, such as those based on the use of Non-Invasive Brain Stimulation (NIBS). NIBS has shown various benefits across different conditions and researchers are increasingly implementing its application, also involving children with ASD and other NDDs.

Augmentative and Alternative Communication (AAC) may be a valuable strategy to sustain the participations of children with NDDs in research procedures and trials, promoting ethical principles of equitable participation and inclusion while adopting a patient-centered approach.

This systematically-conducted review aimed to explore (i) the use of ACC to sustain compliance during research procedures, specifically focusing on neuromodulation procedure involving children with NDDs; (ii) the employment of AAC tools to sustain the compliance of children with NDDs in clinical settings.

Methods

Articles were searched from PubMed database. All found articles were screened by title and abstract, followed by full text if they met the inclusion criteria.

Results

The first search yielded no studies investigating the use of AAC among children with NDDs to support comprehension and implementation of brain stimulation procedures. From the second launched search, twelve studies were reviewed. Almost the majority of eligible papers involved children with ASD (67%), including a small percentage of children with ID (8%) or with mixed etiology NNDs (25%). Of note, most of the included papers (8 out of 12) focused on the AAC use in the dental care setting.

Conclusion

Despite the methodological variability and the paucity of studies exploring the potential of AAC in fostering compliance with clinical and research procedures, this review highlights AAC’s potential for children with NDDs in decreasing stress and anxiety levels while boosting their adherence to healthcare practices. Starting from the current literature evidence, an AAC protocol for boosting compliance with NIBS in children with NDDs and language impairments is proposed.

Implications

Promoting the use ACC in clinical and research settings could be a beneficial approach to enhance clinical practice and evidence-based literature. By developing an AAC protocol for NIBS, our proposal aims to fill these gaps. Ensuring compliance with research procedures is crucial for delivering gold standard care, adhering to ethical statements while advancing scientific knowledge.