AIM: Assess parents' experiences with home-based anal dilations in children with anorectal malformation (ARM). METHODS: Parents of children with ARM who had undergone home dilations (n = 240) were invited to complete the Impact of Event Scale (IES) questionnaire to measure post-traumatic stress symptoms (PTSS) and a study-specific form. Thematic analysis of free-text responses was done following Braun & Clarke's method. Ethical approval was obtained. RESULTS: 142 parents (59 % mothers) of 97 ARM children participated. The mean duration of home dilation was 4.5 months (SD 3.6) with a median time since the last dilation of 10 (0-20) years. 136 parents completed the IES questionnaire
83/136 (61 %) presented PTSS. 40/136 (29 %) had moderate and 15/136 (11 %) severe symptoms. Mothers had higher average IES scores than fathers (17 vs 9, maximum score 75, p = 0.04). Parents who performed dilations exclusively preoperatively had less PTSS than those who did so postoperatively (7 vs 18, p = 0.03). 40 % had wanted more comprehensive training and support, and 43 % preferred healthcare professionals to perform dilations. Home dilations were prematurely terminated in one third of children because parents could not cope. Thematic analysis revealed three major themes: Emotional impact of the dilation procedure, Practical challenges performing dilations and Need for support and training. CONCLUSION: Many ARM parents continue to experience PTSS long after completing home-based dilations. These results show that parents need better practical and psychological support when performing dilations. Parents who find the procedure very stressful should be offered to not do the dilations, and alternative solutions must be proposed.