Table 9 Open-ended survey responses from parents of infants who received and did not receive the SENSE program, stating what they did not like about their involvement in the research study

Staff related/ Communication

“I frequently missed the volunteers during the day.”

“Need more staff to help after hours so babies get more time all day.”

“Communication there wasn’t much communication between the study and mom.”

“Not knowing when they were coming to my kiddos room.”

“No communication, really didn’t know the outcome.”

“We hardly talked to or seen anyone from the study.”

Videorecording

“Being recorded, but you forget it’s there after a while.”

“Not being able to get a copy of recordings.”

“The cameras.”

“Recording.”

Paperwork/ Logging

“Having the record everyday.”

“The log, my baby needed me more and more, I did not have time to keep track of the activities.”

“I’m not going to say it was a dislike, but it was a little hard writing in the book every day. Some days I would forget because my main focus was my baby.”

“I was primarily recording our time spent in the NICU.”

“Keeping track of how time was spent was a challenge some days when there was more than just me visiting.”

“Often forgetting to fill out his paperwork weekly.”

“Too much paper work!”

“All the paperwork.”

“Filling out the questionnaires--way too long with redundant questions.”

“Remembering to fill out the binder.”

Other

“On my part, not being able to do more, due to limited time or distraction at the NICU.”

“I didn’t feel like there was a learning aspect to it.”

“… wasn’t given many resources to learn the benefits of different activities done with the babies.”

Nothing

“Nothing” responses × 27

“Nothing, I really liked the study.”

“Nothing! Everyone was absolutely wonderful!”

“There’s not anything that I disliked about the study. Me and my baby have a great bond because of the study.”

“Nothing” × 4