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treat the babies like their children to take better care” (N13) “I hope that all of the nurses should be trained more to improve their skills” (N10) Table 5 Parent interview analysis theme 1 and subthemes: information giving Theme: (subtheme) T1 T2 T3 Information giving: Focus of discussion on admission “The doctor asked me about the condition of my baby, then I explained and she diagnosed the illness and told me about the treatment for my baby” (P1) “We talked about congenital heart disease and mouth malformation of my baby” (P17) “We exchanged a lot about her condition, and doctor don’t know what to say [sic], he had his upmost sympathy and concluded that the baby’s disease is difficult to treat” (P9) Advice from professionals “The nurses tell me about the baby too. When there’s something I want to ask, they are ready to answer” (P5) “The doctors and nurses are very enthusiastic and give good advice to us” (P21) “Doctor gave advice to me. Because my baby often vomits, doctor told me that I should hold her up while breastfeeding and keep still about 15 min after finishing” (P2) Updates about baby’s condition “Doctors and nurses keep me updated, they go to see me and the baby every morning and every night” (P5) “Doctors go to see my son everyday and give me all the information I need about his condition” (P1) “Doctors go to see the babies everyday and make us feel reassured about the condition of our baby” (P13) Limited information “I have to ask the nurses first to know about the baby’s condition. Nurse not tell me” (P9) “I still do not understand well about the situation of my babies” (P10) “I want to know more about my baby’s condition. I am afraid my baby may not be able to cope with the pain” (P1) Gallagher et al. BMC Pediatrics (2017) 17:161 Page 6 of 11 was a gradual decrease in this response as the study progressed (T1:95% T2:65% T3:57%). There was a gradual increase over time, however, of parents reporting that professionals offered advice or answered questions, potentially indicating more engagement and interaction with parents throughout the baby’s admission (T1:5% T2:13% T3:26%). The majority of parents consistently reported daily updates about their infant’s condition, which usually came from the doctors, although there was a slight decrease in this response as the study progressed (T1:95% T2:78% T3:74%). There was a small increase over the study period of parents reporting that they had as much information as they would like (T1:81% T2:83% T3:87%), however there was a small number of parents at time points 2 and 3 (3 parents [13%] at each respectively) who reported they did not have as much information as they would have liked about their baby’s condition. The second theme, participation in care, comprised of 3 subthemes: (1) perceived engagement (2) desired involvement (3) perceptions of the nursing role (Table 6). Despite a small decrease over time, the majority of parents throughout the study reported feeling engaged during their infant’s stay, and that they felt their role was one of care-giver to their baby (T1:81% T2:74% T3:74%). The number of parents wanting more involvement in their baby’s care increased from T1 to T2 but remained unchanged between T2 and T3, reflected in parents discussing how they would like more involvement in activities such as kangaroo care and more practical advice about how to care for their baby (T1:0% T2:26% T3:26%). For many parents, however they were unsure about how they could become more involved. Over the study period there was an increase in parents sharing positive feedback for the nursing team (T1:29% T2:43% T3:48%), potentially resulting from the frequency that parents reported nurses provided information about their baby to them (T1:0% T2:13% T3:35%). The third theme, personal experiences, comprised of 3 categories: (1) positive experiences (2) practical challenges and (3) changes to benefit parents in the future (Table 7). There was an overall increase of parents reporting satisfaction with their baby’s care despite an initial fall at T2, with parents citing unit cleanliness, the kindness of staff and assistance with caring for their baby (T1:48% T2:30% T3:57%). At
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