Parents’ Experiences of the First Year at Home with an Infant Born Extremely Preterm with and without Post-Discharge Intervention: Ambivalence, Loneliness, and Relationship Impact

Abstract

With increasing survival rates of children born extremely preterm (EPT), before gestational week 28, the post-discharge life of these families has gained significant research interest. Quantitative studies of parental experiences post-discharge have previously reported elevated levels depressive symptoms, posttraumatic stress-disorder and anxiety among the parents. The current investigation aims to qualitatively explore the situation for parents of children born EPT in Sweden during the first year at home. Semi-structured interviews were performed with 17 parents of 14 children born EPT; eight parents were from an early intervention group and nine parents from a group that received treatment as usual, with extended follow-up procedures. Three main themes were identified using a thematic analytic approach: child-related concerns, the inner state of the parent, and changed family dynamics. Parents in the intervention group also expressed themes related to the intervention, as a sense of security and knowledgeable interventionists. The results are discussed in relation to different concepts of health, parent–child interaction and attachment, and models of the recovery processes. In conclusion, parents describe the first year at home as a time of prolonged parental worries for the child as well as concerns regarding the parent’s own emotional state.

Music Is Life—Follow-Up Qualitative Study on Parental Experiences of Creative Music Therapy in the Neonatal Period

“…However, some parents may be happy to be left alone without an imposed schedule for feeding, diaper changing, and therapy appointments and wish to settle by themselves as a typical family with the desire for normality. This result is in line with previous results describing that some parents long to let go of their premature parental identity, even if they had EP infants, and that their need for support varied greatly [ 62 ].…”

“…Interestingly, one of the mothers interviewed called explicitly for such a platform enabling her to share her personal experiences with peers who entirely understand her perspective. Indeed, engaging in social media sharing has been reported as a helpful coping strategy by several authors [ 62 , 63 ].…”

Enhancing Parents’ Well-Being after Preterm Birth—A Qualitative Evaluation of the “Transition to Home” Model of Care

“…In our study, this was the basis to enhance parents’ knowledge and self-confidence to ensure they were prepared for the transition from hospital to home. Parents who participated in a Swedish post-discharge program highlighted the importance of feeling secure and of being supported by a specialized health care professional from the hospital who guaranteed continuity of care and focused on the resources and strengths of the family [ 35 ]. Similarly, in our study, nutritional aspects and the development of the infant were the topics of highest interest to the parents.…”

Sleep patterns and psychosocial health of parents of preterm and full-born infants: a prospective, comparative, longitudinal feasibility study

“…On forehand, we anticipated that parents of preterm infants would be more difficult to recruit since they have a higher burden compared to parents of healthy full-born infants [ 9 ]. Parents of extremely preterm infants with low birthweight have described the situation as psychologically demanding due to a higher risk of infant mortality and morbidity [ 71 ]. Such circumstances can explain why our sample primarily consisted of mainly moderate/late preterm infants (Table 3 ).…”