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.
Highlights
Over 15 million children worldwide are born premature each year, causing a risk of long-term negative effects for the child and the family; this risk increases the earlier the infant is born and the less qualitative care they receive [1]
Out of the 14 interviewed families, six had a foreign background and 43% of the families consisted of at least one parent born outside of Sweden; one family had parents born in western Africa, four families had parents born in Asia, and one family had a parent born in southern Europe
Three main themes consisting of nine subthemes were identified as capturing the right balance of internal homogeneity and external heterogeneity to answer research question I
Summary
Over 15 million children worldwide are born premature each year, causing a risk of long-term negative effects for the child and the family; this risk increases the earlier the infant is born and the less qualitative care they receive [1]. The World Health Organization (WHO) places particular importance on the continuation of care for children born preterm, from the hospital through to outpatient services and family and community care [2]. According to the Swedish Medical Birth Registry, extreme preterm (EPT) birth (i.e., being born before gestational week 28) affects about 400 children each year in Sweden [3]. EPT births require long hospital stays at a neonatal intensive care unit (NICU) often. Res. Public Health 2020, 17, 9326; doi:10.3390/ijerph17249326 www.mdpi.com/journal/ijerph
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