Signe Olsbø , Anders Telle Hoel , Remi A. Karlsen , Astrid I. Austrheim , Hanne Ambrose , Helene Gjone , Marie Hamilton Larsen , Kristin Bjørnland
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引用次数: 0
Abstract
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.
期刊介绍:
The journal presents original contributions as well as a complete international abstracts section and other special departments to provide the most current source of information and references in pediatric surgery. The journal is based on the need to improve the surgical care of infants and children, not only through advances in physiology, pathology and surgical techniques, but also by attention to the unique emotional and physical needs of the young patient.