CHILDREN BORN PREMATURELY. Their fathers' experiences and trends in mortality and morbidity during a ten-year period

Sammanfattning: The overall aim of this thesis was to elucidate fathers’ experience of becoming parents of a pretermborn infant as well as their experience in the years after their infant’s birth. A further aim was to describe the context of neonatal care by investigating trends in outcome during a ten-year period in the southern region of Sweden. In total twenty-one fathers were interviewed at three different time points,three to five days, Paper I (n=8), one to three months, Paper II (n=13) and approximately three years, Paper III (n=8), after their infant was born prematurely. Two different qualitative methods were used,content analysis (Paper I) and hermeneutic phenomenology (Papers II–III).The results of the interviews showed that at the time of the infant’s birth the fathers’ personal needs were of less importance than the needs of their partner and child (Papers I–II). The concept of control and non-control was relevant for the experiences described by the fathers. They seemed to have difficulty remaining in control when they experienced high level of concern, stress and helplessness. When these feelings coincided with low level of security, support and happiness it seemed to end on a level of non-control. In contrast, when security, support and happiness dominated the fathers’ experiences they were able to recapture control (Paper I). The fathers’ lived experience of caring for their very preterm infant (Paper II) was described as a process moving from initial feelings of distance towards feelings of proximity. It was a process that was easily disturbed, and unexpected events out of the father’s control affected and postponed their transition towards proximity. Such events were e.g.deterioration in their partner’s and/or infant’s condition or a transfer of their infant to another unit. A starting point for the father’s transition towards proximity and thereby increasing possibilities to care for their infant was the mother’s well-being. However, being an active participant in their infant’s care was essential (Papers I–II). Fathers’ lived experience of the three years since their very preterm child was born (Paper III) was described as a process of reorganization in life starting on the day the child was discharged from the hospital. The fathers described a journey from past to present time. Being in past time was associated with restrictions in life. The first time at home with the child was described as hard and they had difficulties handling the situation of living as a family with a preterm child. They experienced tensions within the relationship and had to face their own inadequacy. As time went by the fathers started to experience empowerment. This was on one hand associated with their ability to mature in their parental role and on the other hand with their ability to adjust to the situation around them. Being in present time was associated with building a secure base. The fathers described how they had lived through the experience of having a preterm-born child and had adapted to living an ordinary family life. They were now able to believe in a future for the family as a whole. Paper IV had an epidemiological design. During the ten-year period (1995-2004) the proportion of very preterm infants remained stable, around 1.2% of al births, but there was a significant annual increase in the rate of preterm infants born before 25 gestational weeks. The decrease in mortality was significant only for births <25 gestational weeks. For the whole group, very preterm infants, a significant increase in BPD and sepsis was found. It was demonstrated that the rate of infants born before 25 gestational week increased during the 10-year period. This implies that the number of parents who commencing parenthood to the most vulnerable infants will increase over time. Neonatal care has traditionally examined the experiences of mothers of preterm-born children while studies focus exclusively on fathers have been sparse even though increasing. The findings from the qualitative studies reveal that fathers undergo a fragile process not only in connection with their child’s preterm birth but also during the years to come. An increased understanding of their experiences may serve as a basis for adjusting neonatal nursing care during the infant’s hospitalization and after the infant’s discharge.