Table 6 Selected examples of relatives’ comments reported in open-ended questions in GenIDA

A

General comments regarding the lockdown situation

Perception

“She is normally insanely social, and the restrictions are very hard for her. She is anxious if people don’t text back right away or wants to FaceTime—she’s convinced they’re mad at her. This happens during normal life too, but it has gotten worse. She and her sister are also bickering more than usual. She is immensely apologetic for every single thing. She wants to call people and FaceTime with anyone she can.”

Negative

“He ruminates on news headlines—retelling the same info over and over. He gets frustrated easily, will talk disrespectfully and even physically push his sisters if they disagree with him on something.”

Negative

“My son has little change in behaviour during this confinement. We live in the country, so during a regular summer, we wouldn't have much interaction with others anyway. The main challenge has been for us as adults to recreate a type of school schedule so he can continue his education from home.”

Neutral

“We are having a great time as a family, there is a very good atmosphere in the family and the stress of everyday life has disappeared (especially the departure times). I think this has calmed our son down a lot. Thanks to him, we go for long walks (in the mountains without meeting anyone), we have great exchanges with him, we play, and this is good for everyone, including him.” [translated from French]

Positive

B

Relative’s opinion about the consequences of therapy or education cessation during lockdown

“Unable to go to school. Greatly misses social interaction with others. Not exposed to new ideas and activities. Is bored.”

“The major problems are that he cannot go to kindergarten and experience things with other children and that he cannot do proper therapy but only some exercise with power points.”

“Anxiety, restlessness, unknown Daily routine, lack of motivation, lack of stimulation, lack of education/homework/projects to work with therefore boredom.”

“Frustration at lack of routine. Disinterest and shortened attention span for former “school” tasks. Missing social interactions with teachers and peers.”