Long-term perspectives of parents of extremely preterm-born and/or low-birth-weight infants on support provisions and needs from birth to early adolescence

Preterm birth (PTB) affects 7.9% of babies born each year¹ and can result in substantial stress for the infants and their parents. Rapidly growing evidence also indicates potential long-term consequences for both². These challenges, including physiological and psychological aspects, can result in an individual need for support that may extend into adulthood. To date, most research has investigated short-term parental perspectives while neglecting broader and long-term impacts on parents. The present study assesses the perceived support and support needs among parents of PTB adolescents from a long-term perspective. Thereby, it contributes parental perspectives to the development of a “Preterm-to-Adolescent Specifically Tailored Assessment” (PASTA) for transdiagnostic early detection of mental health disorders in adolescence.

Parents were recruited from an existing longitudinal cohort of 265 preterm-born adolescents, belonging to the German Neonatal Network (GNN). Data for descriptive statistics were derived from a self-report questionnaire assessing sociodemographic characteristics (offered/used/desired support services, and perceived support; 7-point Likert scale, 1 = strongly disagree to 7 = strongly agree). Subsequently, interviews with these parents were conducted. These qualitative results will be published separately.

Eight parents were included (six mothers and two fathers). At the time of data collection, the participating parents had a mean age of 46.8 years (range 40-55), with their PTB adolescents being 12.1 years old on average (range 10-13). The mean gestational age at birth was 26.4 weeks (range 23-30), with a mean birth weight of 830.9 grams (range 350-1220 g). All parents had been offered support services for their PTB children, while only fifty percent had been offered any support services for themselves as parents. In retrospect, 62.5% indicated that they would have liked to receive social psychiatric or psychological support over the course of time. Only two mothers reported making use of domestic assistance in the context of PTB, and no other support services were utilized by the parents. There was a high level of agreement between offered and desired support services for the PTB children, as reflected in each child’s participation in an average of five services, with 89.6% of the offered services being utilized. In contrast, mothers reported not feeling sufficiently informed about available support options from pregnancy to adolescence (mothers: median 3.0; fathers: median 5.5). Lastly, retrospectively, parents rated support from extended family higher for the period beyond two years after birth (median 5.5) compared to the first two years (median 4.0), whereas partner support was rated higher for the first two years (median 5.5 vs. 6.5).

The findings provide initial insights into a discrepancy between the support services offered by default and the support parents would like to receive. This indicates that greater emphasis should be placed on widespread offers of psychological support of parents following PTB. Particularly parents without an established family support system may require sustained long-term support, given the importance of family as a support resource over time. Preliminary differences between mothers and fathers also suggest tailoring of support to the gender of parents and the need for further research on ideal needs-based support.

References

1 Institut für Qualitätssicherung und Transparenz im Gesundheitswesen (IQTIG). (2024). Bundesauswertung PM-GEBH: Geburtshilfe. https://iqtig.org/downloads/auswertung/aj2024/pm-gebh/DeQS-RL_PM-GEBH_AJ2024_BUAW_V02_2024-08-15.pdf 2 Starke, V., Diderholm, B., Heyman, M. & Blomqvist, Y. T. (2023). Being parents of extremely preterm children, from a long-term perspective: A qualitative study of parents’ experiences. Early Human Development, 183, 105819. https://doi.org/10.1016/j.earlhumdev.2023.105819