Exploring the most important elements to improve family-integrated care – A parent’s perspective

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Family-integrated care (FICare) has the potential to significantly improve the health of both newborn and parents. This is especially vital when the infant is admitted to the neonatal intensive care unit (NICU) and is thus often separated from their parents. A parent survey conducted in the Netherlands now provides insight into how parents experienced their integration in care. The study shows that most parents are involved to a certain extend. However, they highlight several areas for improvement, such as providing more information and guidance from paediatricians, healthcare professionals and social workers. Parents want to feel more welcome and involved and not just like a visitor at their own newborn’s bedside.

Parent-infant closeness after birth is essential for the development of a good relationship between the parents and the newborn. However, during the infant’s hospitalisation, as required after preterm birth, it is more difficult to maintain this closeness both physically and emotionally. The separation adversely affects the health of both the newborn and the parents. Therefore, it is important to involve parents in the daily care of their infant through concepts of FICare. This has the potential to reduce parental stress and improve parent-infant bonding and health.

The well-established Canadian FICare model defines four main pillars to ensure parental involvement in the ward. Based on this concept, Dutch parents of hospitalised newborns were asked to complete a questionnaire evaluating the parental experience with FICare. They were supported by Care4Neo, a neonatal and patient advocacy organisation, which recruited 344 parents to provide insights into their perspective.


Parents are largely satisfied with their involvement in care

Overall, the study showed a positive picture as most parents felt involved in the care of their newborn and over two-thirds were actively involved in decision-making processes concerning the care of their child. Despite the positive feedback, a lack of structural implementation became apparent. 83% of parents reported the admission to be stressful, andalso experienced it as traumatic. A total of 79% reported a feeling of impaired bonding with their infant.

Parents’ experiences differed between the different facilities. Those parents who were admitted to an open bay unit (OBU) with more than one family in a room reported higher stress levels at admission compared to parents who had their own room in the ward. In addition, parents in the OBU were less often allowed to comfort their newborn during painful procedures and felt less welcome and more like visitors in the ward. While parents with a single room reported better experiences, they also noted that due to the setting there was less peer-to-peer support between parents.


Parental involvement still has much room for improvement

The first pillar of the FICare model focuses on parental education. The survey revealed that more than half of the parents received written information while less than 15% were invited to educational sessions or trainings although being well informed about infant care is a high priority for parents. In addition, it was considered important that paediatricians keep parents regularly informed and that parents can comfort for their child during painful procedures.

The second pillar addresses the education of healthcare professionals. Parents placed great importance on healthcare professionals knowing the importance of collaborating with parents, encouraging skin-to-skin care and make parents feel welcome.

Psychosocial support for parents is a third component of the model. Parents want their mental well-being to be addressed, to have contact with other parents, and to receive counselling from a social worker. Contributing to the stress relief of parents, the fourth pillar focuses on the NICU environment itself. Parents rated 24h access, couplet care, and the possibility to spend the night with their infant the highest priorities.

Overall, the parents were satisfied with their involvement but also expressed wishes for improvement, as structural implementation was lacking. The study highlights that true involvement of parents goes beyond simply inviting them to be present. One mother pointed out that healthcare professionals are only passerbys in the child’s life, giving them the jump start they need. However, parents will always remain the child’s carers and should therefore be involved by definition.


Paper available at:

Full list of authors: Hannah Hoeben; Sylvia Obermann-Borst; Mireille Stelwagen; Anne van Kempen; Johannes van Goudoever; Sophie van der Schoor; Nicole van Veenendaal