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

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.