PDF(Pubmed)
Abstract：
BACKGROUND: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.
摘要：
背景：术后肛门扩张术（PAD）是后矢状面肛门直肠成形术（PSARP）治疗肛门直肠畸形（ARM）或经肛门牵拉（TP）治疗Hirschsprung病（HD）的患者的标准护理。这项研究评估了PAD在ARM或HD儿童看护人中的心理社会影响，这可能为术后护理策略提供信息。
方法：在5年内接受PSARP或TP的ARM和HD患者的护理人员参与了在线调查。问题包括人口统计，患者和护理人员使用PAD的经验，和基线心理社会功能。定量结果以描述性方式报告，而定性的回应被总结为主要主题。
结果：调查显示，护理人员的反应率为26％，其中大多数是女性(91%)和亲生母亲(85%)。患者多为男性（65%），出生与ARM（74％），PAD开始时平均5个月大。看护者报告说，在PAD期间，儿童经历过痛苦(56%)，疼痛（44%），恐惧（41%）而三分之一的人没有负面反应。随着时间的推移,他们的孩子应对PAD的能力变得更容易（38％）或保持不变（41％）。护理人员报告担心/焦虑(88%)，有罪（71%），应力（62%），和挫败感（35％），注意到额外的应对策略来管理日常PAD的情感和后勤挑战将是有帮助的。
结论：尽管PAD是必要的，这对病人和他们的照顾者来说可能是非常紧张的。关键发现强调了需要额外的应对策略，并强调了将社会心理支持纳入术后护理方案的重要性。
方法：在5年内接受PSARP或TP的ARM和HD患者的护理人员参与了在线调查。问题包括人口统计，患者和护理人员使用PAD的经验，和基线心理社会功能。定量结果以描述性方式报告，而定性的回应被总结为主要主题。
结果：调查显示，护理人员的反应率为26％，其中大多数是女性(91%)和亲生母亲(85%)。患者多为男性（65%），出生与ARM（74％），PAD开始时平均5个月大。看护者报告说，在PAD期间，儿童经历过痛苦(56%)，疼痛（44%），恐惧（41%）而三分之一的人没有负面反应。随着时间的推移,他们的孩子应对PAD的能力变得更容易（38％）或保持不变（41％）。护理人员报告担心/焦虑(88%)，有罪（71%），应力（62%），和挫败感（35％），注意到额外的应对策略来管理日常PAD的情感和后勤挑战将是有帮助的。
结论：尽管PAD是必要的，这对病人和他们的照顾者来说可能是非常紧张的。关键发现强调了需要额外的应对策略，并强调了将社会心理支持纳入术后护理方案的重要性。
