Parental Attitudes to Neoanus Dilatations post-reconstruction in Anorectal Malformations (PANDA) Study

Abstract Purpose Some surgeons train parents to undertake routine neoanus dilatations following anorectal malformation surgery. Recent studies suggest this may not significantly reduce the incidence of strictures. This study sought to understand parental experiences of and perceptions about this intervention in order to guide best practice and inform further studies of clinical impact. Methods This qualitative study, using reflexive thematic analysis was carried out in a single-institution. Five parents took part in an audio-recorded focus group with 13 families subsequently taking part in audio-recorded semi-structured interviews. Concurrent analysis of verbatim transcripts guided iterations in data generation. Results Four major themes were identified; 1) parents understood the importance of dilatations; 2) parents experienced distress with anxiety, fear of causing harm and guilt; 3) parents perceived a traumatic reaction from infants including anticipatory stress; 4) some parents perceived detrimental impact on inter-parental relationships with an imbalance in responsibilities for dilatations. Conclusions Parents who accept the importance of dilatations, are placing trust in their clinicians’ guidance despite their negative experiences of the intervention and perceived relational costs between themselves and their child. As the quantitative clinical evidence for neoanus dilatation remains, at best, equivocal, this should not be part of routine practice without further research that considers both clinical outcomes and social costs.