Elsevier

The Journal of Pediatrics

Volume 200, September 2018, Pages 58-63.e1
The Journal of Pediatrics

Original Articles
Parental Perspectives Regarding Outcomes of Very Preterm Infants: Toward a Balanced Approach

https://doi.org/10.1016/j.jpeds.2018.03.006Get rights and content

Objectives

To explore parental perspectives regarding their preterm child at 18 months corrected age and to investigate whether reported answers correlate with level of neurodevelopmental impairment (NDI) as defined by clinicians. We hypothesized that parents would report more negative concerns with increasing level of NDI.

Study design

This study included 190 infants born <29 weeks of gestational age in 2009-2012 at 1 tertiary university health center. Infants underwent detailed developmental assessment at 18 months corrected age, and were classified into either absence or presence of mild to moderate or severe NDI. Parents were asked 2 open-ended questions: “What concerns you most about your child?” and “Please describe the best things about your child.” Open-ended questions were analyzed using qualitative methodology.

Results

In this cohort, 49%, 43%, and 8% of participants had no, mild to moderate, and severe NDI. The majority of parents (72.8%) had both positive and negative aspects to report; 26.8% only had positive ones. The main positive themes invoked by parents included their child's personality (61%), happiness (40%), developmental outcome/progress (40%), and physical health (11%). The main themes regarding parental concerns included neurodevelopment (56%), notably language and behavior, and physical health (24%), particularly growth/nutrition and physical fragility. There was no association between positive themes and categories of NDI, but parents of children with mild to moderate NDI reported more concerns about development.

Conclusions

Neonatal outcome research would benefit from incorporating parental perspectives regarding their child, including negative and positive aspects, enabling physicians to provide complete and balanced information to parents of all preterm infants.

Section snippets

Methods

This cross-sectional survey used data on infants collected prospectively from neonatal intensive care unit (NICU) discharge until 18-22 months corrected age at Centre Hospitalier Universitaire Sainte-Justine, a level III hospital university center. All surviving infants born before 29 weeks of gestational age between 2009 and 2012 were eligible for follow-up. There were no exclusion criteria. The study protocol was accepted by the local institutional review board. All parents were informed and

Results

At the follow-up visit at 18-22 months of corrected age, 270 of the 323 eligible infants who survived until neonatal discharge were assessed (84% follow-up rate). Among the 270 infants seen at 18-22 months of corrected age, 190 had completed both a neurodevelopmental assessment and parental questionnaires, and were considered as study participants (Figure 1; available at www.jpeds.com). Our study participants were representative of all patients eligible for follow-up in terms of maternal and

Discussion

Neurodevelopmental follow-up of preterm infants is crucial for quality assessment of perinatal practice, for research, and to inform both parents and clinicians. We investigated, with open-ended questions, parental perspectives regarding their child at the 18-month follow-up visit, including both positive and negative aspects.

Parents had many positive aspects to report about their children. These mainly related to their children's personalities, their happiness, and how well they were

Data Statement

Data will be made available on request.

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  • Cited by (0)

    Funded by the Fonds de Recherche en Santé du Québec (salary support) to A.J. and T.M.L. The authors declare no conflicts of interest.

    Portions of this study were presented as an abstract at the Canadian Pediatric Society, May 31, 2017, Vancouver, Canada, and the American Academy of Cerebral Palsy and Developmental Medicine, September 14, 2017, Montreal, Canada.

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