Table 8 Open-ended survey responses from parents of infants who received and did not receive the SENSE program, stating what they liked about their involvement in the research study

Sensory support team/Human and nurturing presence

“That there was always someone there with my babies.”

“I loved that my baby got extra attention and care in my absence.”

“The attention my daughter got when I wasn’t here.”

“Everything they did and the help provided for my daughter.”

“Seeing the girls every day! Having someone available when we weren’t there!”

“Good support.”

“My baby had visits when in between my visits. Someone was spending time with him, talking and singing to him while I was gone. He was not alone.”

“All the support from the SENSE team.”

“My baby had interactions when I couldn’t be here.”

“That the days when we weren’t available to come and see Jacob, the women from the SENSE study came to visit. Thank you.”

“They came in and did comfort touch with the baby.”

“Someone was there to comfort my babies when I wasn’t there.”

“The volunteers.”

“I loved knowing that someone could show my child that they weren’t alone when I wasn’t able to be here.”

“When I wasn’t able to be at the hospital someone was there with him.”

“I like that someone came around to check on me and my baby.”

“I like that people from the research study stop by [Rebecca’s] bedside often to see how she and I were doing.”

“Constant visits.”

“I liked the staff”

“My baby always being looked after.”

“Gave my baby the extra care and support she needed.”

“Very nice and friendly people.”

Educational materials

“The study was great! I loved having the binder that gave me developmental-appropriate activities to engage with my baby.”

“I liked the reading materials”

“If I needed more books they were willing to get me more.”

“How it only takes one little device [log sheets] to track things in a little person.”

“Books.”

“Products helping support the babies (booklet)”.

Parent education

“They taught me how to recognize when my child was stressed.”

“I liked all the neat things that you learned about.”

“The information.”

“The study taught me how to help my baby advance by the week. Ex: when and how long to read, hold, rock and play music to him.”

“It gave us awareness about a lot of things that come with dealing with a premature baby. It made us pay attention to our stays with having to log what we do. Even though we missed logging a couple of days.”

“I like that it guided me to do different things with my baby like reading, singing, and holding my baby.”

“It showed me how to provide more care for my daughter”

“It gave me practical ways to help and bond with [Jimmy]”

“The tips I got for my baby’s needs. To really see how much we’ve grown in the NICU.”

“Learning new things.”

“Helped me help my twins.”

“It was nice to track when I was in the NICU, and see what activities I could do with my baby.”

“Knowing if interaction with a preemie helped or hurt the baby as opposed to just letting him sleep and grow.”

“It made me more aware of the sensory activities I could share with my baby.”

“Filling out the questionnaire daily kept me aware of how I was spending my time with my babies and made me think about beneficial ways to spend that time.”

Parent/child Interaction

“It gave me a much better idea on how to interact and be positive with my kids.”

“Interaction with my baby.”

“The timing of holding him.”

“It gave us more time with holding our son.”

“[Abby] needed constant care, contact and stimuli.”

“Help with caring for my children through touch.”

“Got me more involved.”

“I liked the closeness I got with my kids.

“It gave me confidence to be involved.”

Participation in research

“Helping to expand research to help other babies in the NICU.”

“I like that we can hopefully impact other lives with this study.”

“I enjoyed sharing our experience and the development that came as a result.”

“Gift card at the end.”

“Just liked what they studied.”

“How they informed about the study.”

“I know it’s very important for parents to be with their babies in the NICU so I am glad the study is trying to make things better for them.”

Developmental impact

“They did great exercises and all types of activities with my baby that were very helpful.”

“It helped give my baby a well-rounded experience even though she could not be home.”

“Getting to see my child grow and get stronger.”

“Being able to share info about progression.”

“Towards the end they evaluated his developmental skills.”

“Seeing the evaluation toward the end of the hospital stay.”