Research Paper
Parental psychological distress and quality of life after a prenatal or postnatal diagnosis of congenital anomaly: A controlled comparison study with parents of healthy infants

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Abstract

Background

Parental early adjustment to a prenatal or postnatal diagnosis of congenital anomaly has been studied mainly within a pathological and deterministic perspective, giving us an inadequate view of the impact of the diagnosis.

Objectives

Adopting a comprehensive approach on parental adjustment, we aimed to characterise the impact of the diagnosis on psychological distress and quality of life, in the early postdiagnosis stage. The effects of gender and the timing of the diagnosis were also examined.

Methods

In this cross-sectional study, 42 couples with healthy infants and 42 couples whose infants were prenatal or postnatally diagnosed with a congenital anomaly responded to the Brief Symptom Inventory-18 and to the World Health Organization Quality of Life–Brief instrument.

Results

In the early postdiagnosis stage, parents whose infants were diagnosed with a congenital anomaly presented higher levels of psychological distress than did the parents of healthy infants (F2,79 = 6.23, p = .003), although they displayed similar levels of quality of life (F4,78 = 0.62, p = .647). Mothers reported more adjustment difficulties than fathers in both groups. Receiving the diagnosis in the prenatal period was associated with higher maternal psychological quality of life (Z = –2.00, p = .045).

Conclusion

The occurrence of a diagnosis of congenital anomaly during the transition to parenthood adds to an accumulation of stress-inducing events and manifests itself in psychopathological symptoms. Maintaining a positive evaluation of well-being may be understood as a parental resource to deal with the diagnosis. The importance of adopting a comprehensive perspective on parental adjustment is highlighted.

Section snippets

Psychological distress

As a deterministic and pathological perspective on the consequences to the family of the birth of a disabled child prevailed for several decades [6], psychological distress has predominantly been used as the indicator of parental adjustment to their child’s DCA. Parents of infants with a prenatal or postnatally identified DCA presented higher levels of anxiety [5], [7], [8], [9] and depression [8], [10], [11] after the diagnosis, in comparison both with parents of healthy infants in the same

Quality of life

Quality of life, as defined by the World Health Organization [20], encompasses an individual’s perception of his or her own physical, psychological, social, and environmental well-being, taking into account their culture and value systems, as well as his or her goals and expectations. QoL has been increasingly used as a health status indicator in medical and public health research [21]. The measure has informative value when assessing the adjustment of parents whose children have a DCA [19].

Aims and hypotheses

In this study, we adopted a comprehensive approach to parental adjustment after a DCA. In addition to considering both maternal and paternal experiences, parental adjustment was operationalized in terms of both psychological distress and QoL. We aimed (1) to examine parental adjustment after a prenatal or postnatal DCA, in comparison with a group of parents of healthy infants (clinical versus comparison group), (2) to investigate gender differences on parental adjustment in both groups, and (3)

Procedure

This study was approved by the Ethics Committees of two Portuguese urban referral hospitals (Hospitais da Universidade de Coimbra and Centro Hospitalar de Coimbra). Inclusion criteria for the clinical group (parents of infants with a DCA) were having an infant with a prenatal or postnatally identified DCA, without the occurrence of perinatal death. A group of parents of healthy infants (infants without prenatal or postnatally identified DCAs or other medical problems) similar to the parents of

Data analyses

Analyses were conducted with IBM SPSS, version 19.0. We performed the data analyses using the couple as a unit to take into account the interdependence of the couple’s observations. The database was restructured to consider each couple as the subject of the analysis and each partner’s score as a different variable.

We used descriptive statistics for the demographic and clinical characterisation of the sample and to describe parental adjustment (psychological distress and QoL). Both χ2 tests and t

Sociodemographic and clinical characteristics of the sample

The final sample was composed of 84 couples (42 from the clinical group and 42 from the comparison group). Sociodemographic and clinical data are presented in Table 1. We found no significant differences between groups with regard to sociodemographic and clinical characteristics, except for maternal age (t82 = 2.22, p = .029; mothers of the clinical group were significantly older than the mothers of the comparison group). Regarding the characteristics of the DCA, the majority of diagnoses

Discussion

The main finding of this study is that, in the early postdiagnosis stage, parents whose infants were diagnosed with a congenital anomaly presented higher levels of psychological distress than parents of healthy infants, while their levels of QoL were similar. The occurrence of the DCA appears to have, in the early postdiagnosis stage, a greater impact on particularly emotional and overt manifestations (anxiety and depression) rather than on dimensions that reflect a global evaluation of

Conclusions and practical implications

Despite our detachment from the deterministic perspective, health professionals must recognise that the occurrence of a DCA during the transition to parenthood adds to an accumulation of stress-inducing events, which may result in an increased risk of developing psychopathological symptoms in the early postdiagnosis stage, although these symptoms may be understood as the result of a normative process of individual adjustment to the stress-inducing events [35]. Specifically, we highlight the

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 infants 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 Institute of Cognitive Psychology, Vocational and Social Development of the University of Coimbra (FEDER/POCTI-SFA-160-192). Ana Fonseca and Bárbara Nazaré are supported by doctoral scholarships from the Portuguese Foundation for Science and Technology (SFRH/BD/47053/2008 and SFRH/BD/43204/2008, respectively). The authors have no conflicts of interest to declare. Although Ana Fonseca and Bárbara Nazaré were supported by doctoral scholarships, there is no relation between the Portuguese Foundation for Science and Technology and the subject of this research work.

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