Brief Report
Medical information concerning an infant's congenital anomaly: Successful communication to support parental adjustment and transition

Part of the content of this manuscript has been presented at a National Conference in 2013.
https://doi.org/10.1016/j.dhjo.2015.08.005Get rights and content

Abstract

Background

When a diagnosis of congenital anomaly (CA) is made, parents are confronted with new and complex medical information, which may impact their parental adjustment. However, few studies have explored the role of information concerning the CA in parental adjustment, during the transition to parenthood.

Objective/hypothesis

This study aimed to characterize both parents' perceptions of information concerning the CA and to investigate their role in maternal and paternal adjustment, one month after the disclosure and six months post-birth.

Methods

Thirty six couples whose infants were prenatally- or postnatally diagnosed with a CA participated in this prospective longitudinal study. During both assessment times (Time 1: one-month after the disclosure; Time 2: six-month post-birth), they answered the Brief Symptom Inventory-18, the EUROHIS-QOL-8, and other specific questions to assess parents' information perceptions.

Results

Mothers were more satisfied than fathers (p < .01) with the amount of information that was received at the disclosure, although mothers and fathers reported similar levels of comprehension of information. Six-month post-birth, both parents were similarly satisfied with the information that was received, although mothers sought significantly more (p < .01) additional information. Both maternal and paternal adjustment were significantly associated with maternal perceptions of information concerning CA.

Conclusion

Health professionals should recognize the important role of information concerning CA in parental adjustment and tailor their communication practices in order to promote parents' satisfaction and comprehension of the medical information. Despite the prominent influence of maternal perceptions on parental adjustment, both parents should be included in the communication process.

Section snippets

Participants and procedures

This study was approved by the Ethics Committees of the Hospitais da Universidade de Coimbra and Centro Hospitalar de Coimbra, Portugal. Inclusion criteria for the study included: having an infant who was prenatally- or postnatally diagnosed with a CA, being at least 18 years of age and having a level of literacy that permitted comprehension of the assessment protocol. Data collection occurred between September 2009 and February 2012. Approximately one month after the disclosure of the

Parents' perception of information concerning the CA

Table 2 presents results concerning parents' perceptions of information about the CA. Most parents had never heard about the CA prior to the disclosure, and among those who had heard about the CA, information levels were similarly low for both genders (Z = −.79, p = .432).

At the disclosure, mothers were significantly more satisfied than fathers with the amount of information given by health professionals, but no differences were found concerning comprehension levels, which were moderately high

Discussion

Our findings support the important role of information about the CA for Portuguese parents and are innovative because they highlight the following: a) gender differences in the perceptions of information about the CA, with mothers being significantly more satisfied than their partners with the information that is given at the disclosure (but not six-months post-birth); b) the differential impact of the information perceptions on both parents' individual adjustment at the disclosure of the

Conclusions

Health professionals should recognize the important role of information concerning the CA in parental adjustment and tailor their communication practices in order to promote parents' satisfaction and comprehension of the medical information. In fact, some specific clinical implications can be derived from the findings of this exploratory study. First, health professionals should include both mothers and fathers in the process of communicating information about the CA. Prior studies have

Acknowledgments

The authors wish to thank the services that enabled the sample collection: Pediatric Cardiology Service of the Pediatric Hospital – Centro Hospitalar de Coimbra (parents of babies with congenital heart disease) and the Obstetrics and Neonatology Departments – Hospitais da Universidade de Coimbra (the remaining participants from the clinical and comparison groups).

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    This study is part of the “Reproductive decisions and transition to parenthood after a pre- or postnatal diagnosis of congenital anomaly” research project, integrated in the Relationships, Development & Health Research Group of the R&D Unit Cognitive-Behavioral Center for Research and Intervention of the University of Coimbra (PEst-OE/PSI/UI0730/2014). Ana Fonseca and Bárbara Nazaré were supported by PhD Scholarships from the Portuguese Foundation for Science and Technology (SFRH/BD/47053/2008, SFRH/BD/43204/2008, respectively).

    Conflict of interest/financial disclosure: The authors have no conflict of interest to declare. Although Ana Fonseca and Bárbara Nazaré were supported by PhD scholarships, there is no relation between the Portuguese Foundation for Science and Technology and the subject of this research work.

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