Wehrli Lea A, Ariefdjohan Merlin, Ketzer Jill, Matkins Kristina, De la Torre Luis, Bischoff Andrea, Judd-Glossy Laura
International Center for Colorectal and Urogenital Care, Children's Hospital Colorado, Aurora, CO 80045, USA.
Child and Adolescent Mental Health Division, Department of Psychiatry, University of Colorado Anschutz Medical Campus, Aurora, CO 80045, USA.
Behav Sci (Basel). 2024 Apr 30;14(5):379. doi: 10.3390/bs14050379.
Postoperative anal dilations (PAD) are the standard of care for patients after a posterior sagittal anorectoplasty (PSARP) for anorectal malformation (ARM) or a transanal pull-through (TP) procedure for Hirschsprung disease (HD). This study assessed the psychosocial impact of PAD among caregivers of children with ARM or HD, which may inform postoperative care strategies.
Caregivers of patients with ARM and HD who underwent PSARP or TP within five years participated in the online survey. Questions included demographics, patient and caregiver experiences with PAD, and baseline psychosocial functioning. Quantitative results were reported descriptively, while qualitative responses were summarized as major themes.
The survey indicated a response rate of 26% caregivers, with most being female (91%) and biological mothers (85%). Patients were mostly male (65%), born with ARM (74%), and were five months old on average when PAD began. Caregivers reported that during PAD, children experienced distress (56%), pain (44%), and fear (41%), while a third noted no negative reactions. Over time, their child's ability to cope with PAD got easier (38%) or stayed the same (41%). Caregivers reported worry/anxiety (88%), guilt (71%), stress (62%), and frustration (35%), noting that additional coping strategies to manage the emotional and logistical challenges of daily PAD would be helpful.
Although PAD is necessary, it can be highly stressful for the patients and their caregivers. Key findings emphasized the need for additional coping strategies and highlighted the importance of integrating psychosocial support into the postoperative care regimen.
术后肛门扩张术(PAD)是肛门直肠畸形(ARM)患者接受后矢状位肛门直肠成形术(PSARP)或先天性巨结肠病(HD)患者接受经肛门拖出术(TP)后的标准护理措施。本研究评估了PAD对ARM或HD患儿照料者的心理社会影响,这可能为术后护理策略提供参考。
在五年内接受PSARP或TP的ARM和HD患者的照料者参与了在线调查。问题包括人口统计学信息、患者和照料者对PAD的体验以及基线心理社会功能。定量结果以描述性方式报告,而定性回答则归纳为主要主题。
调查显示照料者的回复率为26%,大多数为女性(91%)且是亲生母亲(85%)。患者大多为男性(65%),患有ARM(74%),开始进行PAD时平均年龄为五个月。照料者报告称,在PAD期间,儿童出现痛苦(56%)、疼痛(44%)和恐惧(41%),而三分之一的人指出没有负面反应。随着时间推移,他们孩子应对PAD的能力变得更容易(38%)或保持不变(41%)。照料者报告了担忧/焦虑(88%)、内疚(71%)、压力(62%)和沮丧(35%),指出采取额外的应对策略来应对日常PAD的情感和后勤挑战会有所帮助。
尽管PAD是必要的,但它对患者及其照料者可能造成极大压力。主要研究结果强调了需要额外的应对策略,并突出了将心理社会支持纳入术后护理方案的重要性。