Abstract：
BACKGROUND: A congenital anomaly of the hand can affect both function and appearance, and places a stressful psychological burden on the family, especially parents. Surgery during infancy may prevent later disabilities, but little is known of the importance of parents\' involvement in these decisions in terms of psychological adjustment or treatment satisfaction.
OBJECTIVE: To understand parents\' perceptions of involvement in their child\'s surgery for limb anomaly, and their preferences for the support of healthcare professionals. Results should lead to recommended interventions to improve familial adjustment to the child\'s condition.
METHODS: Qualitative data was collected from semi-structured confidential self-reported interviews of 35 parents (65.7 % mothers) of children who had received reconstructive surgery for congenital hand anomaly (at age 24.89 ± 9.26 months); interviews were coincident with the 1-month postoperative follow-up. The parents ranged in age, gender, educational background, economic status, and type of anomaly. Data analysis referenced Colaizzi\'s phenomenological approach.
RESULTS: The concerns of the parents were consolidated into three themes: attitudes toward Parental involvement in surgical decision-making; status of parental involvement in Surgical decision-making; and need for help and support.
CONCLUSIONS: Some parents were comfortable leaving surgical decisions entirely to the medical staff, but most preferred active participation and were disappointed at their lack of inclusion. The maximum benefit from surgery for congenital abnormalities in infancy is achieved when the parents and extended families have access to the expertise, skills, encouragement, and psychological support of healthcare providers.
OBJECTIVE: To understand parents\' perceptions of involvement in their child\'s surgery for limb anomaly, and their preferences for the support of healthcare professionals. Results should lead to recommended interventions to improve familial adjustment to the child\'s condition.
METHODS: Qualitative data was collected from semi-structured confidential self-reported interviews of 35 parents (65.7 % mothers) of children who had received reconstructive surgery for congenital hand anomaly (at age 24.89 ± 9.26 months); interviews were coincident with the 1-month postoperative follow-up. The parents ranged in age, gender, educational background, economic status, and type of anomaly. Data analysis referenced Colaizzi\'s phenomenological approach.
RESULTS: The concerns of the parents were consolidated into three themes: attitudes toward Parental involvement in surgical decision-making; status of parental involvement in Surgical decision-making; and need for help and support.
CONCLUSIONS: Some parents were comfortable leaving surgical decisions entirely to the medical staff, but most preferred active participation and were disappointed at their lack of inclusion. The maximum benefit from surgery for congenital abnormalities in infancy is achieved when the parents and extended families have access to the expertise, skills, encouragement, and psychological support of healthcare providers.
摘要：
背景：手的先天性异常会影响功能和外观，给家庭带来了巨大的心理负担，尤其是父母。婴儿期手术可以预防后期残疾，但在心理调整或治疗满意度方面，父母参与这些决定的重要性鲜为人知。
目的：了解父母对参与孩子肢体异常手术的看法，以及他们对医疗保健专业人员支持的偏好。结果应导致推荐的干预措施，以改善家庭对儿童状况的调整。
方法：定性数据是从35名接受先天性手畸形重建手术的儿童（年龄为24.89±9.26个月）的父母（65.7％的母亲）的半结构化秘密自我报告访谈中收集的；访谈与术后1个月的随访相吻合。父母的年龄不等，性别,教育背景,经济地位,和异常类型。数据分析参考了Colaizzi的现象学方法。
结果：父母的担忧被合并为三个主题：对父母参与手术决策的态度；父母参与手术决策的状况；以及需要帮助和支持。
结论：一些父母很乐意将手术决定完全留给医务人员，但大多数人更喜欢积极参与，并对他们缺乏包容性感到失望。当父母和大家庭能够获得专业知识时，婴儿期先天性畸形手术的最大收益就可以实现，技能,鼓励,以及医疗保健提供者的心理支持。
目的：了解父母对参与孩子肢体异常手术的看法，以及他们对医疗保健专业人员支持的偏好。结果应导致推荐的干预措施，以改善家庭对儿童状况的调整。
方法：定性数据是从35名接受先天性手畸形重建手术的儿童（年龄为24.89±9.26个月）的父母（65.7％的母亲）的半结构化秘密自我报告访谈中收集的；访谈与术后1个月的随访相吻合。父母的年龄不等，性别,教育背景,经济地位,和异常类型。数据分析参考了Colaizzi的现象学方法。
结果：父母的担忧被合并为三个主题：对父母参与手术决策的态度；父母参与手术决策的状况；以及需要帮助和支持。
结论：一些父母很乐意将手术决定完全留给医务人员，但大多数人更喜欢积极参与，并对他们缺乏包容性感到失望。当父母和大家庭能够获得专业知识时，婴儿期先天性畸形手术的最大收益就可以实现，技能,鼓励,以及医疗保健提供者的心理支持。
