Feasibility and acceptability of an online response inhibition cognitive training program for youth with Williams syndrome

Abstract

Williams syndrome (WS) is a genetic neurodevelopmental disorder often accompanied by inhibitory difficulties. Online cognitive training programs show promise for improving cognitive functions. No such interventions have been developed for individuals with WS, but to explore the practicality of large-scale online cognitive training for this population, we must first investigate whether families of those with WS find these programs feasible and acceptable. Twenty individuals aged 10–17 years with WS, along with parents, participated in a pilot online cognitive training program supervised in real time using videoconference software. We evaluated the feasibility and acceptability of this response inhibition training using three parent questionnaires. Descriptive data are reported for the measures of feasibility and acceptability. Overall, the online procedures received a positive reaction from families. Parents were likely to recommend the study to others. They indicated training was ethical and acceptable despite feeling neutral about effectiveness. The frequency and duration of sessions were acceptable to families (two 20-to-30-min sessions per week; 10 sessions total). Families provided feedback and offered suggestions for improvement, such as more flexibility in scheduling and decreasing time spent in review of procedures.

Pilot study of the effectiveness of a telehealth group for improving peer relationships for adolescents with neurofibromatosis type 1

“…The telehealth delivery of PEERS® has shown improvements in social skills knowledge, social responsiveness, social skills, number of adolescent reported get-togethers, and comparable findings to in-person outcomes [ 42 , 43 ]. Importantly, research on other telehealth interventions within rare populations such as with Prader-Willi syndrome, Williams syndrome, and NF1 over the last five years have pointed to the promise of telehealth approaches with individuals with rare neurogenetic conditions [ 13 , 14 , 44 , 45 ].…”

“…The lack of research on social skills interventions is likely to be due to rarity of NF1 which presents challenges to conducting face-to-face intervention work with weekly sessions for an extended period of time (e.g., for 14 weeks as in the PEERS® intervention). However, the indication that telehealth interventions may be useful in children and adolescents with other genetic neurodevelopmental conditions [ 44 , 45 ] and the now available telehealth approach for the PEERS® intervention makes exploration of this intervention within NF1 feasible. The central aim of the proposed research was to conduct a pilot study to provide proof of concept of the effectiveness of a 14-week telehealth-delivered PEERS® intervention to improve social skills and peer interactions for adolescents with NF1.…”