When the baby is premature : experiences of parenthood and getting support via videoconferencing

Abstract: The overall aim of this doctoral thesis was to describe parents' experiences of having an infant born prematurely and experiences on the use of real-time videoconferencing in providing support to parents of preterm born infants at home. A descriptive qualitative method was chosen to achieve the overall goal of this thesis. Qualitative research interviews were used for data collection and qualitative content analysis was used for data analysis. All studies included in this thesis were conducted in collaboration with a neonatal intensive care unit (NICU) in the northern part of Sweden.This thesis describes parents' reaction to the preterm birth as unexpected; they were not ready or prepared for it. The initial time after the birth felt surreal and it was hard to feel like a mother or a father. Parenting was experienced with anxiety as well as with a lot of stressors. Parents were unacquainted with and had a great need for knowledge about preterm birth. The lack of knowledge was straining, as parents wanted to understand what was happening. Parents were worried about the infant getting ill, injured, and being affected for life, or not even surviving. Being close to their infant was vital. Fathers also wanted to be with their partner as they were protective over both mother and infant. The preterm birth made it possible for fathers to spend time with their infant and they thought that they had a stronger bond with their baby compared with those who had full-term children.Taking their infant home was experienced with mixed feelings, but this made it possible for the whole family to be together. The experience with most staff was regarded as positive as parents felt they were well treated. The opposite was also described - not being involved in the infant's care and in making decisions to the extent that they wanted. To be able to cope and feel confidence about caring for their infants, parents needed support, both at the NICU and after going home. Parents must be given the opportunity to share their experiences of having an infant born prematurely with others, especially the partner, nursing staff, and parents with children born prematurely.Having access to staff at all hours by videoconferencing was supportive and gave parents confidence in their new situation. However, the need to control the use of videoconferencing was expressed. The videoconference meetings were comparable with the meetings parents and certified pediatric nurses (CPNs) had at the NICU. Videoconferencing enabled CPNs to meet the whole family and to assess the overall situation at home; security could be provided to the family. The use of the equipment made them reflect on continuing and developing the use of videoconferencing, but it takes time to implement changes. Videoconferencing can be a way to offer support to families after bringing their preterm infant home. This implies a change in traditional nursing care in order to avail of perceived benefits using technology. The results in this thesis have implications for nursing staff meeting families with a child born prematurely as well as for parents with prematurely born infants. Understanding the specific needs of parents is of outmost importance for nursing staff to enable them to provide support and facilitate parenting. Meeting parents with openness and listening to their experiences can help them both as individuals and as a whole family.