Vavilov Sergey, Roberts Elysa, Pockney Peter, Smith Grahame H H, Starkey Malcolm, Deshpande Aniruddh V
School of Medicine and Public Health, The University of Newcastle, NSW, Australia; Urology Unit, Department of Surgery, The Children's Hospital at Westmead, NSW, Australia.
Department of Occupational Therapy, School of Health Sciences, The University of Newcastle, NSW, Australia.
J Pediatr Urol. 2025 Apr;21(2):448-453. doi: 10.1016/j.jpurol.2024.11.019. Epub 2024 Nov 28.
Three major parties are involved in the hypospadias treatment journey - the patient, their parents/carers, and the surgeon. There is a strong trend towards involving all three, where possible, in deriving evidence around the care pathways. Currently, there are little data available on surgeons' perspectives of distal hypospadias care.
This study explored the reflections of Australian and Aotearoa New Zealand Paediatric hypospadias surgeons on the journey and experience of children born with distal hypospadias and their families, with the aim to improve this journey to achieve a better healthcare experience and satisfaction. We sought to understand a) what informs the content and process of a hypospadias surgeon's consultation with parents/carers, b) how hypospadias surgeons negotiate surgical outcomes, parents/carers' views and preferences, social circumstances, cultural context, and their clinical opinions and treatment recommendations, and c) how surgeons perceive the journey for families with a child born with distal hypospadias could be improved.
We conducted a qualitative descriptive study to generate rich descriptions of the lived experiences of hypospadias surgeons caring for children with distal hypospadias and their families. Data were collected using semi-structured interviews with nine paediatric hypospadias surgeons in Australia and Aotearoa New Zealand. All participants had routinely practised hypospadias surgery as a consultant for at least five years. Participants were purposively sampled to obtain a diverse representation of perspectives. Data were collected and analysed using the reflexive thematic analysis methodology.
Two overarching themes reflecting the lived experiences of paediatric hypospadias surgeons emerged: The journey is as varied as the children and their families, and The best possible journey. The first overarching theme is characterised by three themes: Journey feature, Journey process, and Journey influences, each illuminating main elements informing participants' perspective of the treatment journey. Surgeons perceive the journey as highly individualised; they mark the start of the journey differently but put a great emphasis on the consultation and identify several essential parts of it. The second overarching theme reflects participants' ideas on key elements of hypospadias care that could improve the treatment journey, such as better information for carers and non-surgeon healthcare providers, more communication training for surgeons in their formative years, and societal acceptance of anatomical variance.
The journey of children and families is perceived by surgeons as variable, individualised, and affected by different influences. Those influences highlight the importance of knowing your patient/family and creating tailored, individualised, family-centred communication and care.
尿道下裂治疗过程涉及三个主要方面——患者、其父母/照顾者以及外科医生。在可能的情况下，让这三方都参与到护理路径相关证据的获取过程中，这一趋势愈发明显。目前，关于外科医生对远端尿道下裂护理观点的数据非常有限。
本研究探讨了澳大利亚和新西兰的儿科尿道下裂外科医生对患有远端尿道下裂的儿童及其家庭的治疗过程和经历的看法，旨在改进这一过程，以获得更好的医疗体验和满意度。我们试图了解：a）什么因素影响尿道下裂外科医生与父母/照顾者会诊的内容和过程；b）尿道下裂外科医生如何协调手术结果、父母/照顾者的观点和偏好、社会环境、文化背景以及他们自己的临床意见和治疗建议；c）外科医生认为如何能够改善患有远端尿道下裂儿童家庭的治疗过程。
我们进行了一项定性描述性研究，以丰富地描述护理患有远端尿道下裂儿童及其家庭的尿道下裂外科医生的生活经历。通过对澳大利亚和新西兰的九位儿科尿道下裂外科医生进行半结构化访谈来收集数据。所有参与者作为顾问常规开展尿道下裂手术至少五年。采用目的抽样法以获取不同观点的代表性样本。使用反思性主题分析方法收集和分析数据。
出现了两个反映儿科尿道下裂外科医生生活经历的总体主题：治疗过程因儿童及其家庭而异，以及尽可能好的治疗过程。第一个总体主题由三个主题构成：治疗过程特点、治疗过程、治疗过程的影响，每个主题都阐明了影响参与者对治疗过程看法的主要因素。外科医生认为治疗过程高度个体化；他们对治疗过程起点的界定各不相同，但非常重视会诊并确定了其中几个关键部分。第二个总体主题反映了参与者对尿道下裂护理关键要素的看法，这些要素可以改善治疗过程，例如为照顾者和非外科医疗服务提供者提供更好的信息，在外科医生成长阶段提供更多沟通培训，以及社会对解剖变异的接受。
外科医生认为儿童及其家庭的治疗过程具有多样性、个体化且受不同因素影响。这些影响凸显了了解患者/家庭以及创建量身定制的、个体化的、以家庭为中心的沟通和护理的重要性。
