Participants’ characteristics
Parents
A total of nineteen parents participated in the study. Five focus groups were conducted, with each focus group consisting of 4 participants, except in one case where one parent became unexpectedly unavailable. The sessions lasted 32 to 40 minutes. The profile and the characteristics of the participating parents and a description of newborns’ diagnosis are presented in Table 2. None of the parents had prior experience with hospitalisation in neonatology.
Healthcare professionals
Twenty healthcare professionals participated in the study. Four focus groups were conducted with each focus group consisting of 4 to 6 participants. The duration of the interviews ranged from 36 to 62 minutes. The characteristics of the healthcare professionals are summarised in Table 3.
Thematic analysis
We obtained a saturation of the data, i.e. all the themes were found in each group, and we did not find a new theme after several analyses of the data.
The themes extracted from the data, classified in order of frequency, are presented in Table 4. Five main themes arose from the analysis of the data from the parents' focus groups. Seven main themes were identified in the healthcare professionals’ groups. Four themes were found to be common between both groups.
Quotes illustrating each theme are presented in Table 5.
Four Themes common to both groups
- Best interest of the child and improved care
Naturally, the child’s best interest was of prime importance to parents. The introduction of video was seen as a potential mean to improve the child’s care through improved understanding of the child’s behaviour and a better assessment of the child's need for personalized care. The use of video could contribute to and improve already available monitoring tools such as the patient monitoring scope, or the NidCap. According to parents, if the camera offers an advantage for healthcare professionals and hence improves the care of the child, then it is an acceptable addition.
While the interest of the child was not the first issue raised by healthcare professionals, it was a main concern, with some ethical questions about what is best for the child. The benefits of the technology in terms of optimising the care of the newborn, either diagnostically or by enabling the personalization of care through a better understanding of the newborn’s behaviour, was an important discussion among healthcare professionals.
- Impact of images on parents
Parents responded mostly positively to the use of video as a webcam to view images of their child. The reasons provided were: the facilitation of parent-child bonding in situations of forced separation (reduced mobility due to a C-section, mother-child hospitalization in two different centres), the feeling of being close to their baby, parental reassurance by monitoring the well-being of their child at all time and finally a better grasp of a highly technical environment around the newborn. Concerns were also raised in both groups. For example, in situations where access to live video is not available, parents could potentially worry that a serious event has occurred creating a source of additional stress. Parents indicated that it would probably be necessary for the images to be explained by the healthcare professionals, referred to as "experts". The contextualization of images by professionals was a guarantee requested by parents. One example cited by the parents was if their child was in distress, requiring an intubation or similar procedure, the "shocking" images without appropriate explanations could lead to stress.
Parents also expressed the fear of hypervigilance if continuous home connection was available, with possible fatigue. Some parents were worried that they would no longer be able to benefit from "real" rest time outside the room, which would have a significant physical and psychological burden.
The issue of privacy was also widely raised. The camera recordings were seen as potentially intrusive. Of particular concern was the effect of the potential intrusion on intimate moments between parents and child, such as skin-to-skin moments or during breast-feeding. The camera was then viewed as a ‘third-eye’. In addition, parents were worried about the confidentiality of their own conversations around the system.
- Concern for the possible impact on healthcare professionals
The potential impact of the system on healthcare professionals was a concern for parents. They feared that healthcare professionals would feel increased anxiety while carrying out care under video surveillance, thereby increasing the risk of medical error.
The presence of the video was also seen as potentially harming the parent-healthcare professionals’ relationship by reducing the amount of time professionals spend in the room.
Access to live video was also seen as an opportunity to optimize how healthcare professionals target interventions with respect to sleep phases, thereby reducing unnecessary noise and light exposure to the child. But this lesser presence could also be detrimental with less time spent interacting with parents, as professionals will often combine a visit to the baby with a chance to discuss care with parents. This time of exchange was considered by the parents as privileged time with an expert who reassured them, but also allowed for the maintenance of social bonds which are often fragile during the period of hospitalization.
According to parents, having healthcare professionals under constant webcam surveillance, could lead to a loss of trust between parents and professionals.
This theme was the primary concern of healthcare professionals. A possible change in behaviour of the healthcare professionals could occur with the presence of the camera by fear of "doing something wrong" or "being judged", even if this issue was mitigated by the fact that the professionals were already used to caring for newborn in front of parents. The other concern raised was the risk of self-censorship when interacting with the newborn because of the unpleasant feeling of being ‘heard’, with the potential loss of more genuine humane interactions such as singing a lullaby or adopting a more familiar attitude towards the child. However, positive aspects were also identified, such as a more rigorous approach to hygiene and the potential for personalized and behavioural care to be provided to newborns. The impact on the healthcare professionals's time in the child's room was another topic of discussion. However, all professionals agreed that there is likely an "adaptation" phase to video recording, which seemed to be confirmed by professionals who are already using video in their clinical practice.
- Informed consent and guarantee of use
Both healthcare professionals and parents mentioned that information and consent to video recording were essential prerequisites. They emphasized the need to obtain consent from both parents and exposed healthcare professionals.
Both parties shared the same concerns about the requirement to provide the purpose of the recording and the guarantee of use, with the two main questions being: who will have access to the videos and why.
The child's consent was an issue raised only by healthcare professionals. In this situation, healthcare professionals wondered who the guardian of the child’s best interest would be.
One theme exclusively mentioned by parents
- Data protection and privacy
Data protection was the last point raised by parents with the fear of data being compromised when WIFI and external network are use. This is an issue that is widely discussed but not well thought through from a technical and feasibility perspective.
Three themes only mentioned by healthcare professionals
The forensic aspect was widely discussed by the various professions within the group of participating healthcare professionals (psychologist, doctors, nurses). By analysing the themes per profession, the legal dimension is the first theme mentioned by doctors, fearing a possible legal course of action by parents. This was also widely addressed by the other professionals interviewed, but in the instance of doctors, there was a particular fear of retaliation from the institutional hierarchy. According to the healthcare professionals, video could facilitate this course of action because of the "evidence" images can provide. There was a concern that a third party (typically lawyers) would erroneously analyse images taken out of their context in the event of adverse medical events. Another fear was the forensic impact due to the unavailability of images during technical problems as this could be interpreted as a desire on the part of the healthcare professionals or other actors to "hide" some events.
- Potential use: practice improvement, teaching, research
The suggestions of potential ways to use video recording varied depending on each interviewee’s occupation and experience. Nurses mentioned how complementary videos are with the tools already available, one example being the combination of video with NidCap observations in order to refine evaluations of oral quality or respiratory maturity. Doctors also spoke of the video as a complementary diagnostic tool to cardiorespiratory monitoring. However, in all professional categories, the interest in simulation and e-learning teaching to improve clinical practices was high.
- Technical aspect and feasibility
One technical concern with the introduction of video recording was equipment maintenance and training of the staff in charge of this tool. Professionals mentioned the need for assistance from biomedical engineers and the designation of a charge person for the management of this technology. More practical and performance related questions were also addressed, such as the focus of the camera or the different modes.