Abstract：
BACKGROUND: Countless papers have been published regarding the management and clinical outcome of vesicoureteral reflux (VUR), still no active treatment has been proven superior to another, regarding preserving renal function. When considering comparable treatment alternatives, qualitative research is needed to understand the parents\' perspectives and preferences.
OBJECTIVE: This study aims to describe the parents\' experiences of infant high-grade VUR (hVUR) regarding continuous antibiotic prophylaxis (CAP), surgical intervention (SI), urinary tract infection (UTI) and renal damage.
METHODS: We performed four randomized, semi-structured focus groups (FG) with 19 parents to 15 children (aged 1,5-6 years). All children had been diagnosed with hVUR at <8 months of age and treated with CAP (all groups) and SI (two groups). Discussions were recorded, transcribed and analysed to content. The sample size for the FGs was based on category saturation, which was confirmed through comparison analysis in multiple FGs.
RESULTS: The FGs generated 2,897 parent-reported experiences, of which this study reports on 1,123, sorted into the abovementioned four themes and underlying categories. Negative experiences regarding CAP, such as stress regarding the daily intake and worries about long-term use and side effects, were abundant, whereas positive experiences were few. The experiences regarding SI were negatively affected by inadequate information and postoperative difficulties and positively by empathy, accurate information and adequate preparations. The increased risk of UTIs were described as a constant emotional stress causing restricted social activities, frequent visits to the hospital and challenges regarding urine-sampling. There was a common awareness of renal damage, but few experiences reflected any actual worry.
CONCLUSIONS: The daily struggle with medications and monitoring for symptoms, concerns of future antibiotic resistance and a parental preference of SI have been documented in previous studies. FG methodology effectively collects data from several participants during the same occasion, the goal being to generate discussions that enable researchers to see the world from the participants\' perspective. Since the management of infants with hVUR is still under debate, qualitative research can remind of valuable patient and parent perspectives.
CONCLUSIONS: This study shows that CAP and the risk of UTI have non-negligible, everyday impact on family life, while renal damage seems of secondary importance. The concerns of surgical treatment are related to an isolated occasion, which can be optimized with proper care and improved preoperative preparations. Awareness of parents\' experiences and preferences is helpful when managing children with hVUR.
OBJECTIVE: This study aims to describe the parents\' experiences of infant high-grade VUR (hVUR) regarding continuous antibiotic prophylaxis (CAP), surgical intervention (SI), urinary tract infection (UTI) and renal damage.
METHODS: We performed four randomized, semi-structured focus groups (FG) with 19 parents to 15 children (aged 1,5-6 years). All children had been diagnosed with hVUR at <8 months of age and treated with CAP (all groups) and SI (two groups). Discussions were recorded, transcribed and analysed to content. The sample size for the FGs was based on category saturation, which was confirmed through comparison analysis in multiple FGs.
RESULTS: The FGs generated 2,897 parent-reported experiences, of which this study reports on 1,123, sorted into the abovementioned four themes and underlying categories. Negative experiences regarding CAP, such as stress regarding the daily intake and worries about long-term use and side effects, were abundant, whereas positive experiences were few. The experiences regarding SI were negatively affected by inadequate information and postoperative difficulties and positively by empathy, accurate information and adequate preparations. The increased risk of UTIs were described as a constant emotional stress causing restricted social activities, frequent visits to the hospital and challenges regarding urine-sampling. There was a common awareness of renal damage, but few experiences reflected any actual worry.
CONCLUSIONS: The daily struggle with medications and monitoring for symptoms, concerns of future antibiotic resistance and a parental preference of SI have been documented in previous studies. FG methodology effectively collects data from several participants during the same occasion, the goal being to generate discussions that enable researchers to see the world from the participants\' perspective. Since the management of infants with hVUR is still under debate, qualitative research can remind of valuable patient and parent perspectives.
CONCLUSIONS: This study shows that CAP and the risk of UTI have non-negligible, everyday impact on family life, while renal damage seems of secondary importance. The concerns of surgical treatment are related to an isolated occasion, which can be optimized with proper care and improved preoperative preparations. Awareness of parents\' experiences and preferences is helpful when managing children with hVUR.
摘要：
背景：已经发表了关于膀胱输尿管反流（VUR）的管理和临床结果的无数论文，仍然没有积极的治疗被证明优于另一种治疗，关于保护肾功能。当考虑可比较的治疗替代方案时，需要进行定性研究来了解父母的观点和偏好。
目的：本研究旨在描述父母对婴儿高级别VUR（hVUR）持续抗生素预防（CAP）的经历，手术干预（SI），尿路感染（UTI）和肾损害。
方法：我们进行了四个随机，半结构化焦点小组（FG），有19名父母和15名儿童（1,5-6岁）。所有儿童均在<8个月时被诊断为hVUR，并接受CAP（所有组）和SI（两组）治疗。讨论被记录下来，转录和分析内容。FGs的样本量基于类别饱和度，通过多个FGs的比较分析证实了这一点。
结果：FG产生了2,897个家长报告的经验，其中本研究报告1,123项，分为上述四个主题和基本类别。关于CAP的负面经验，例如对每日摄入量的压力以及对长期使用和副作用的担忧，丰富，而积极的经历很少。关于SI的经验受到信息不足和术后困难的负面影响，并受到同理心的积极影响。准确的信息和充分的准备。尿路感染的风险增加被描述为持续的情绪压力导致社交活动受限，频繁到医院就诊和尿液取样方面的挑战。对肾脏损害有共同的认识，但是很少有经验反映出任何实际的担忧。
结论：每天与药物治疗和症状监测的斗争，在以前的研究中已经记录了对未来抗生素耐药性和父母对SI的偏好的担忧.FG方法在同一场合有效地从几个参与者那里收集数据，目标是引发讨论，使研究人员能够从参与者的角度看待世界。由于hVUR婴儿的管理仍在争论中，定性研究可以提醒有价值的患者和父母的观点。
结论：这项研究表明，CAP和UTI的风险具有不可忽视的，每天对家庭生活的影响，而肾损害似乎是次要的。手术治疗的担忧与孤立的场合有关，可以通过适当的护理和改进的术前准备进行优化。在管理hVUR儿童时，了解父母的经验和偏好是有帮助的。
目的：本研究旨在描述父母对婴儿高级别VUR（hVUR）持续抗生素预防（CAP）的经历，手术干预（SI），尿路感染（UTI）和肾损害。
方法：我们进行了四个随机，半结构化焦点小组（FG），有19名父母和15名儿童（1,5-6岁）。所有儿童均在<8个月时被诊断为hVUR，并接受CAP（所有组）和SI（两组）治疗。讨论被记录下来，转录和分析内容。FGs的样本量基于类别饱和度，通过多个FGs的比较分析证实了这一点。
结果：FG产生了2,897个家长报告的经验，其中本研究报告1,123项，分为上述四个主题和基本类别。关于CAP的负面经验，例如对每日摄入量的压力以及对长期使用和副作用的担忧，丰富，而积极的经历很少。关于SI的经验受到信息不足和术后困难的负面影响，并受到同理心的积极影响。准确的信息和充分的准备。尿路感染的风险增加被描述为持续的情绪压力导致社交活动受限，频繁到医院就诊和尿液取样方面的挑战。对肾脏损害有共同的认识，但是很少有经验反映出任何实际的担忧。
结论：每天与药物治疗和症状监测的斗争，在以前的研究中已经记录了对未来抗生素耐药性和父母对SI的偏好的担忧.FG方法在同一场合有效地从几个参与者那里收集数据，目标是引发讨论，使研究人员能够从参与者的角度看待世界。由于hVUR婴儿的管理仍在争论中，定性研究可以提醒有价值的患者和父母的观点。
结论：这项研究表明，CAP和UTI的风险具有不可忽视的，每天对家庭生活的影响，而肾损害似乎是次要的。手术治疗的担忧与孤立的场合有关，可以通过适当的护理和改进的术前准备进行优化。在管理hVUR儿童时，了解父母的经验和偏好是有帮助的。
