The psychological impact of genital anomalies on the parents of affected children

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Abstract

Background

There is scarce information on how parents cope with children with genital anomalies.

Participants & methods

Twenty-six parents of 25 children with a median age of 0.5 years (r, 5 days–10.8 years) were recruited through the Scottish Genital Anomaly Network and had a quantitative assessment of parenting stress and coping patterns; a qualitative assessment by a semi-structured interview was also performed in19 parents.

Results

In five parents, the total stress score was above the 85th centile, denoting clinical levels of stress. Three parents showed reduced coping pattern scores for social support, self-esteem and psychological stability and three showed a reduction in utilization of communication with medical professionals. The scores did not correlate with each other or the extent of genital anomaly in the child. Semi-structured interview analysis revealed parents' need for more knowledge about the imminent surgery, post-operative care and their desire for written information that could complement the time-restricted contact with the clinical team.

Conclusion

In the majority of cases, parents did not display abnormal levels of stress or coping on quantitative assessment. The semi-structured interview provided further information about the parents' level of coping and potential for stress and highlighted the need for more effective exchange of clinical information at a critical period of the parent–child relationship.

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