Parents’ needs and perceptions on emotional support in neonatal care and patterns of stress in parents of preterm infants during the first year after birth

Abstract: Many parents experience preterm birth as traumatic and develop high levels of emotional stress, anxiety, and depressive symptoms. This can have a negative impact on the bonding process and the development of their parental identity. The emotional support provided by the staff varies between Swedish neonatal intensive care units (NICUs), and little is known about parents´ needs and preferences for emotional support. Further, there are knowledge gaps regarding parental stress in fathers and their needs for emotional support, differences in stress between mothers and fathers, change of parental stress over time and potential predictors for parental stress.The aim of this thesis was to explore the needs and preferences for emotional support in parents of preterm infants during their infant’s hospitalisation in a NICU, and to describe parental stress in mothers and fathers up until the infant’s age of 12 months and predictors for parental stress. Study I was a qualitative study using semi-structured interviews with 51 parents of preterm infants, which were analysed using qualitative content analysis. The results showed that parents need a sense of coherence during their infant’s stay in a neonatal intensive care unit, and they want to be offered emotional support according to their preferences. Many parents preferred to attend professionally led parental groups as other NICU parents could really understand their situation and feelings. Parents also emphasised the value of combining parental groups with other means of support.Study II was a longitudinal cohort study in which data on self-reported parental stress during the first year were obtained from 493 mothers and 329 fathers of preterm infants and analysed using descriptive statistics, Student’s independent t-tests, linear regression, and linear mixed-effects modelling. The results showed that mothers perceived more role restriction than fathers, and that fathers experienced more social isolation than mothers. Further, parental stress decreased during the first year for mothers but increased for fathers, especially between 6 months and 12 months postpartum. For both mothers and fathers, having twins and a lower perceived general health were associated to higher levels of parental stress. In addition, mothers with infants of lower gestational age experienced significantly higher levels of parental stress. In conclusion, individualised emotional support is important for parents of preterm infants for them to manage their situation both during their infant’s hospitalisation and during the first year postpartum. Apart from professional support, peer-support in the form of professionally led parental groups are perceived to be potentially valuable emotional support by parents. This peer-support could, preferably, be combined with other means of support during hospitalisation as ‘one size does not fit all’. In a next step, support interventions need to be designed, tested, and evaluated. Antonovsky’s theory of Sense of Coherence can be used to identify emotional needs in NICU parents and how to provide emotional support consistent with the parents’ preferences. After discharge from the NICU, vulnerable groups of parents, including parents of very preterm infants and twins need additional support. Moreover, there is a need in fathers for additional emotional support programmes offered during the first year of infants’ lives.